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  • Being a Parent with FA

    Posted by Matt Lafleur on January 19, 2019 at 11:30 am

    People who have the responsibility of being a parent, along with the trials of a diagnosis of FA, may feel overwhelmed and all alone at times.  But sharing your story will help connect you others! What are some things you’ve discovered as a parent who deals with FA? Do you have any parenting tips/tricks that you wish you would’ve known sooner?

    Jonathan replied 5 years, 5 months ago 2 Members · 3 Replies
  • 3 Replies
  • Jonathan

    January 23, 2019 at 10:50 am

    My son (10) is my little helper. He’s only known me to use a wheelchair or scooter or to crawl around the floor/ground. He’s aware of my obvious limitations by now, so he helps me by fetching things, assembling my scooter, and pushing it if it gets stuck in the sand. I don’t think he quite understands yet my risky heart issues. He’s sensitive and gets scared when I attempt something dangerous.

    Because I collect disability income, I’m a stay-at-home-dad (SAHD) and he stays at home too (mostly) where I practice teaching him (i.e., homeschool). Besides academics, I emphasize certain values. I try to show him that, despite ataxia, I can be strong and mentally tough. So I try to encourage the same mentality…but I probably push too hard some times. I don’t want him to develop a habit of making excuses and avoiding fear or adversity. It took me years to overcome that myself.

    We spend nearly every waking minute together. And he’s watching me. Every single day. Really, though, what I show him, I’m showing myself. Knowing his eyes are always there reminds me to do what I say he should do. I have to lead by example. His development is a serious responsibility. And with any responsibility, you get a sense of purpose and meaning. He keeps me sharp and from growing useless. He gives my life direction like a compass. In parenthood, Friedreich’s ataxia is just a decoration.

    • Matt Lafleur

      January 23, 2019 at 11:06 am

      That’s really profound man. I am afraid of parenthood for me, but you paint a new picture. Thanks for that.

      I do have one question, and I apologize if it’s out-of-line. Has he ever used any aspect of FA as an insult to you, if that makes sense. Has your child ever said something about you that insulted you? Sorry if that’s too personal; you don’t have to answer.

  • Jonathan

    January 23, 2019 at 11:35 am

    Parenthood is supposed to be scary. It’s serious work and sacrifice. It’s so scary that some folks avoid it (even after conception). I don’t do it alone, though, and I wish that for every family. My son Leo has a devoted mother — my wife.

    And insult me? LOL, in my home, we use words like cripple and don’t hide our dark sense-of-humor. I think it’s a healthy way to cope with the weirdness of ataxia. He knows what’s not appropriate in public, though. Sure, he makes fun of me sometimes, but I laugh with him. His impressions of my slurred speech or crooked movement are good. It’s harmless stuff. And I won’t act like a pansy.

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