Dandy-Walker Syndrome

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Dandy-Walker Syndrome
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    Community Voices

    Brothers doc emailed him telling him what neurologist said

    My parents and myself strongly feel that the dandy walkers that my brother has is what's affecting his emotions and outbursts. He hasn't gotten an MRI scan done since he was 18 years old. My brother is now 28 and still struggling to control his feelings and thoughts and seemed to have gotten worse with age. We kept pushing him to try to ask for an MRI scan and my bro gets defensive cause he doesn't want to get it done. I got him to email his doc about it and his doc said he would email a neurologist asking if an MRI scan would be good since he hasn't had one in years and he got an email back today saying no it wouldn't do anything since there are no new symptoms. i think it's absolute bullshit because there's a chance this dandywalkers is affecting his brain and im so upset because this adds to my brother thinking he doesn't need to get a scan done. An MRI scan would tell us if there is any pressure being put on his brain.

    Community Voices

    VNS Journey

    <p>VNS Journey</p>
    Melody Rinker

    To the Pregnant Mom Who’s Been Told to Make a Painful Choice

    In what seemed like seconds, I went from a glowing pregnant mom expecting boy #2 and boy #3, to a crying mess, not knowing what to expect. It began with Dandy-Walker syndrome and progressed to lissencephaly. We were informed of our rights, warned of looming death, and on more than one occasion, we feared we might lose our son before he could even be born. As our news unfolded and my heart unraveled, I started searching frantically for moms like me: moms who had heard this or a similar combination of news and were choosing life. I found moms who had kids doing things we thought might be impossible. I also found moms whose babies were already angels. But the message I got by observing all of the stories was the same. There was no way to predict what was coming, or what our story would be. That frantic search is one of the reasons I share our story so openly. And sure enough, those moms like me find us. They sometimes write me with concerns or questions. I am honest, but I can never offer any assurance about where they are headed. I wish I had something perfect to say to that mom, to me back then. But I cannot advise. I cannot predict. If I knew then what I know now… Well, that might make the rest of the pregnancy easier. But that wouldn’t be fair. A large part of dealing with an in-utero diagnosis is the wait, the uncertainty. Being able to see photos of my smiling blessings might be comforting, but it wouldn’t tell me the whole story. It might misrepresent some of the heartaches we’ve had. Somewhere out there, another mom like me is reading this. Perhaps not long after hearing her own baby has been dealt an unexpected diagnosis. And just like I could have in no way looked into the future, that mom cannot possibly look at our story and know where she is headed. I can’t say, “Your baby will leave that hospital and enrich your lives in ways you never thought possible!” or “Your baby will have a smile that could inspire the world!” I couldn’t have known that about our boys before they were born. And that mom can’t possibly know that about her own baby today. The cloud of uncertainty, of fear — i t cannot be escaped. So instead of looking at where our boys are today, instead of seeing how we find ways to love and be joyful, instead of talking about how this has strengthened my faith rather than shattering it, instead of giving you the “If I knew then what I know now” thoughts — I’ll just say this: I don’t know where your road will lead or how your story will unfold. I don’t know what decision you will make, and despite the judgment you might expect to find here, you will find none. No one can understand what you are feeling unless they have been there, and only those who have been told to choose truly know. But know this: If I were once again at that painfully vulnerable point, I would without a doubt make the same choice. If I was pregnant again today, right in this moment, and we heard those dreaded words about our next child. If I heard the odds, the risks, the downsides, the costs, the horror stories. If I read the life expectancy over and over until the phrase “two years” was burned into my tear-filled eyes. If I knew as little about that baby now as I did about our twins back then, I’d still do it all again. I’d see it through. I’d give him/her/them a chance. Because no matter how your story unfolds, I believe you can never regret loving your child with all you have. Melody’s sons. A version of this post first appeared on Two If By Faith.

    Why I’m Asking Your Kids (and You) to Stare at My Son

    Dear Parents of Kids in My Son’s Children’s Church, I’ve finally decided to put in the effort to take my son, Austin, to Sunday morning children’s church. I’ve tried in the past on and off, and either his medical issues were too much to deal with, or I couldn’t deal emotionally with seeing the differences in my kid and your more typical kids. However, I feel now is the time, and he’s ready whether I am or not. After checking in last Sunday, I pushed Austin’s wheelchair into the dimly lit room where they hold the large group portion of children’s church. The kids in his age group — ranging from ages 3 to 5, as well as kindergarteners — filled the first two rows of chairs. I maneuvered him down the outside aisle and parked him next to a little girl. She immediately looked at Austin, frowned with fear or uncertainty in her eyes and shrank as far as she could in her chair away from him. My immediate response was to choke back a sob and will away tears. I smiled at her. She did not smile back and would not look at Austin. I turned my eyes towards the teacher and pretended to listen until I regained my composure. Then I noticed a couple of boys and girls in the row ahead of us who kept glancing back. One boy in particular could not take his eyes off Austin. He stared hard, drank Austin in, his curiosity unabashed. And I loved him for it. I’ve found that if I assume the best and invite that person to satisfy their curiosity, to ask any questions (including those that force me to be tolerant of what would normally be considered rude), to stare at Austin, to take in all his differences, not to feel like being curious is wrong, that child (or adult) will not be afraid of Austin next time they see him. That child will be the first to smile at Austin and greet him. And that child has the potential to become Austin’s biggest ally and friend. However, the little girl, if not given an opportunity to indulge her curiosity, will probably remain afraid of what she perceives as different. She has probably been taught not to stare or acknowledge differences and doing so would be offensive or rude. So without permission to overcome her curiosity or fear, she will instead avoid contact. I feel sad for that little girl because… I am that little girl. Our society has advocated (with good intentions) for so long that we be politically correct so as to not offend someone, even inadvertently, that I have become fearful if someone seems different from me. I avoid eye contact. I shrink back. I glance, realize there is a difference and look away as quickly as possible, pretending no difference exists. But I’m curious. I want to absorb their difference. I want to stare. I want to ask questions. I could become their new best friend. But I live in so much fear of offending them that I will not even acknowledge their existence except maybe with a brief smile before I look (and walk/run) away. Out of my desire not to hurt them and because I fear I don’t know all the politically correct rules, I will avoid them. And I don’t want people to avoid Austin. I don’t want them to escape his presence as quickly as possible. I don’t want them so afraid of offending him (or me) that they won’t even acknowledge him. And I don’t want to teach him to be hypersensitive and easily offended (like I can be in regard to myself or on his behalf). I don’t want him to live in fear like I do. I want kids to see his smile when they engage him. I want them to know him, including all his challenges. I want them to love him . I want those barriers to be acknowledged, called out and invited to talk about. I want him to love who he is and be OK with discussing his challenges with other people (even if his mom is doing it for him). So parents, please tell your kids to stare at Austin. Tell them to ask us questions. Tell them to be curious. And I promise to welcome your kids to Austin’s side. I promise to answer their questions with as much grace as I can muster. And I promise to love them like I want them to love Austin. Sincerely, A Recovering-From-Being-Easily-Offended Special Needs Mom This post originally appeared on “Where are My Mary Janes?“ The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.