Your Perception of My Story Is Irrelevant

January 13, 2020

Does the post-holiday season have you down? If so, I get it. Who else has had their dreams for the new year stomped on by those who are supposed to love you the most?

I was determined to change my life for the better by erasing bad habits and nurturing positive, healthy approaches to life. But after all of the present-giving and carol-singing this past holiday I was punted right out of my happy vibe orbit, and I found myself floating helplessly in a space of haunting emotions.

 

Turing 40 this past October year was a chance for a new improved version of myself; a person who easily threw away old adjectives that no longer described me.

I don’t want to be so sensitive. So now I brush things off and refuse to let the critics occupy my mind.

I don’t want to be a doormat. So now I see people for who they are, and I set up boundaries accordingly.

Transforming isn’t easy. It takes focus and commitment to the change each and every day. And the results are worth all the effort.

My whole adult life I struggled to understand how to be a forgiving person without being used and taken for granted. This time last year, after a lousy 2018 holiday season, I put up a boundary that was long overdue. I realized, with the help of some fantastic friends, that I could forgive the words and actions, not hold anger in my heart, and at the same time refuse to put myself in the position to be hurt again.

 

Unfortunately, a close family member had crossed the line with hateful comments about me and my children, resulting in a firm boundary being set in place.

Criticizing me for how I look, my religion, or my life choices hurts my feelings as it would many of us—I’ve had to work daily to thicken my skin—but when someone attacks my children, the gloves come off and the “mama bear” inside is awakened. I wonder how many of you are like this, too. Especially if you have a child with special needs.

Holiday gatherings with family tends to create a perfect scene for scrutiny and gossip, although I’ve witnessed it other times as well.

Last year’s voiced observation was about my youngest son, whose special needs are not as obvious as my oldest. He has progressed and regressed, and progressed and regressed, as often happens with kids like him. This family member accused me of fabricating his challenges and creating an adult who could not care for himself, due to my sheltering and enabling.

Any parent could imagine my offense. Parents of special needs children feel the deep stab of pain even more so, as if it were their own family’s criticism of their child and their parenting.

But maybe only those who have a severely disabled child and a child who is less noticeably affected could completely understand why these comments are so devastating.

We parents of obviously affected children know what it is like to mourn the future of our child. We know all about planning for a future where our child never leaves home, and we know the dreaded fear of wondering what will happen to them when we die.

We also know what it’s like to hope with every ounce of our being that our other children will progress and meet the milestones and achievements that our obviously affected child never will. We envision graduations, weddings, and grandchildren. We want them to have it all.

Why would we ever want or wish the kind of limitations one child has on another child?

Mother and Son, by Thomas Sully
Metropolitan Museum of Art

Parents of special needs children often walk around with a broken heart. With every breath, the shards inside us cut a little more. Every graduation party, wedding, baby announcement, trophy or award, we are sliced up inside, barely surviving, yet we continue to act like everything is okay. We can’t afford to fall apart; our kids need us.

My holiday buzz this past December was ruined by other judgmental family members who told me I was being unreasonable for enforcing the boundary I had set. In fact, they thought she was right. They attribute my youngest’s behavior to attention-seeking, justifying their stance solely on the fact he has a disabled brother. But if the critics took the time to ask about his childhood, they would come to understand that this child has always had the greatest share of my attention, because he has always been a much more challenging child to raise. He was more defiant, argumentative, and more needy. My oldest son has learned to be independent in ways my youngest son has still not conquered.

People who have no idea the life we have lived need to keep their opinions and assumptions to themselves.

Most people don’t know the sleepless nights, the buckets of tears cried, or the guilt that rings so loudly in our ears that we can barely function day to day. Warrior parents know: What should I have done better? What should I do now?

My heart is constantly mourning what could have or should have been.

So for those of you reading this and thinking of someone you know, whom you believe to be inventing their child’s challenges, I urge you to ask yourself if there may be more to the situation than you know. Ask kind questions so that you might be able to better understand and offer comfort rather than what you might think are obvious solutions.

Because it can be heartbreaking and life-crushing to know your child will remain like a ten-year-old forever. Regardless, you love them unconditionally and couldn’t imagine life without them. You work yourself to the point of exhaustion to get them as independent as possible—you love and celebrate each and every little gain! There is no way a person who lives a life like this could ever keep a child they raise from progressing on purpose, or choose to magnify their weaknesses. Warrior parents have one mode—and that is to travel the road to success one small step at a time.

Let’s stop assuming we know everything about other people’s lives and have some compassion. Why is this so hard to remember this time of year? Do you feed the homeless, or buy gifts for a struggling family yet forget to show love and understanding to your own family?

Just because my children are adults, doesn’t mean they are done progressing. We are working on goals every day, just as we always have. And just because we haven’t met your criteria of success—on your timeline—doesn’t make you right, and it doesn’t negate our journey or our successes. We will continue to work as long as I am on this earth.

My resolution to improve who I am and how I handle difficult situations is steadfast and immovable.

I know my story. Your perception of my story is irrelevant.

~ Green Bean Girl

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15 Responses to Your Perception of My Story Is Irrelevant

  1. nhokkanen says:

    Why do some people never learn the art of asking questions and listening? Instead, they judge – creating convenient little fictions based on skewed observations, filtered through their random, limited experiences and perceptions.

    Gaslighting parents of disabled children unfairly rewards the speaker with an opportunity to feel smugly superior though having invested little or no intellectual curiosity into understanding aspects of the life issues of others.

    Chronic regressions from immune dysfunction irrevocably change and limit a child’s developmental trajectory toward adult independence. The “sink or swim” mentality some neurotypicals project onto others would in the disability community amount to neglect, with potentially injurious and/or lethal consequences.

  2. Rebecca Lee says:

    Sorry this happened to you. Aren’t our sacred holidays fun?
    My kids never got injured because they are old enough to have miss the craziness that is pediatrics these days.

    Rebecca Rust Lee
    coauthor with Andy Cutler of “The Mercury Detoxification Manual.”

  3. Julie Stewart says:

    Wow-set those boundaries green bean girl. That family member needs to learn to show and shut up. When you keep that boundry, possibly meaning a life with out the not-so-nice-girl, your life will have more room for those that are there, not those issuing judgement and shame. Your right, perception is not reality, and is certainly not relevant.

  4. Been There says:

    What I think is obvious is that the person who sent you the text has obvious control issues bordering on pathological.

    “I’m sorry if YOU THOUGHT I was mean, but…”

    Not “I’m sorry my words hurt you,” or “I’m sorry I upset you.”

    “I’m sorry YOU THOUGHT I was mean.”

    That’s called a “non-pology”, folks. or sometimes a “fauxpology.”

    And the pathological part is that she blamed YOU from the very first words, and then just got meaner.

    “YOU made excuses.”

    “YOU made him into a special kid.”

    “YOU are always sick.”

    “YOU made your kids dependent.”

    “Shame on YOU.”

    Dear God, if that’s an apology, what does she do when she’s really angry?

    This wasn’t even ONE attack. It was a series of vicious attacks, dressed up at the beginning to look like an apology.

    Whoever this person is, she is dangerously toxic.

    Instead of defending your parenting skills, your health choices, your values, and your children to her, or to any of us, you need to understand what SHE is doing. It’s not about you, or about your sons, and never was.

    It was about her controlling your emotions, about her deliberately making you feel anxious and hurt.

    My instinct is screaming that you need to put as much distance between yourself and this person as possible, as soon as possible.

    If she’s a close family member, consider getting counseling.

    If not — run as fast as you can away from her and don’t look back.

  5. Mary Klukowski says:

    I can totally relate. Thanks for sharing. I spent the majority of my life believing my twin daughter’s brain damage and so so many delays were due to them being pre-term. They were small, but not damaged. Perfectly knitted. It only took me thirty+ years to awake that they are vaccine-injured. Oh the guilt… I support you Green Bean Girl. You are my tribe. My families denial of The Truth is irrelevant.

  6. Elaine Michaels says:

    What mean, spiteful things to say. Whoever hasn’t walked in your shoes. I am sorry that you or anyone else has to go through these type of things. Let it go – it is their issue, not yours!

  7. Kim says:

    Is there anything better than homeopathic medicine. I say its the best medicine on the planet and is great for all you are going through.

    • Billie Rubin says:

      Well, depending on what disease or injury you have, there are lots of things better than homeopathic treatment. Ask your local homeopath, chiropractor, or naturopath if they would prefer their standard regimen over a rigorously tested and researched treatment for most cancers, say, or serious infections. It seems as if so many are so virulently anti-Pharma that the true successes are overlooked. If there are long-term successes, for example, in treating and, possibly, curing autism, where do you think it’s likely to originate? From science.

      • ProfessorTMR says:

        You may not be aware of it, but at least some children’s autism has already been “cured” by homeopathy. Read Impossible Cure, by Amy Lansky, who left her career at NASA to be a homeopath after watching its power in treating her son.

      • Rebecca Lee says:

        Ultimately, you have to do what works. Some children react really well to one thing while for the next child it won’t work at all. At least in the department of treating symptoms.
        If the problem that is causing the neurological symptoms is mercury, and it usually is, you need to chelate it out of the child’s body so their biochemistry can start working properly again. The safe way to do this is with the Andy Cutler protocol.

        Rebecca Lee, coauthor with Andy Cutler, of The Mercury Detoxification Manual

      • Mary Klukowski says:

        Only problem with science as the solution is the children aren’t born with these “autism” symptoms and behaviors, as I painfully watch my three grandchildren have these issues manufactured for them by the “healthcare” industry. Watch what happens after they come home from their 2-, 4-, 6-, 12-, 18- month “well baby” checks.

      • Edward says:

        Modern medicine is now big business and it’s purpose seems to be all about making money. I am referring to the chronic illness side of medicine as apposed to the miraculous improvements in accident/trauma rehabilitation.

        When you refer to the science of medicine you cannot possibly be talking about medical treatments for any chronic illness because modern pharmaceutical medicine doesn’t have a clue about any of them, and there are so many.

        Putting your faith in science is one thing but drug testing, reporting and methodology is so very flawed. Consider the topic of mismatched framing (https://straightstatistics.fullfact.org/article/mismatched-framing-or-how-mislead-without-really-trying) that big pharma uses to sell their drugs, and then reconsider if it is science or is it the business of making money. Consider iatrogenic death (https://www.ourcivilisation.com/medicine/usamed/deaths.htm) for a peak at how dangerous pharmaceutical drugs are, especially in combination.

        Do you really want scientific research and studies? Then I suggest some reading of Doctoring Data by Dr. Malcolm Kendrick: https://drmalcolmkendrick.org/

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