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  • Do family dynamics play a role in your life?

    Posted by deann-r on June 9, 2023 at 9:03 am

    Family dynamics fascinate me. Technically I’m a middle child. My little brother passed away from complications of SMA when he was 4 ½, so despite being a middle, for much of my life I was the youngest.

    Growing up, my big sister, who doesn’t have SMA, was tasked with keeping an eye on me. We’ve had to navigate this aspect of our relationship throughout our lives.

    What are your family dynamics like? Do you feel supported by your family?

    alyssa-silva replied 1 year ago 4 Members · 8 Replies
  • 8 Replies
  • anna

    June 12, 2023 at 5:37 am

    Great topic! Like you, I have an older sister who doesn’t have SMA. We used to be very close, but she moved to another country for studies years ago, settled there and had a family of her own. We’ll always be family, obviously, but there was no way our relationship wouldn’t be affected by distance to some extent. She, too, assumed the responsibility of keeping an eye on me when we were kids, although I don’t recall my parents asking her to, but I don’t think it ever stopped her from living her own life and having her own friends.

    I also have two very loving parents who are always there for me and try their best to keep me safe, healthy and happy even when they do it the wrong way. Judging by what I see in other families, it’s not to be taken for granted.

    I’d like to have more connections, but my way of life doesn’t really encourage forming new relationships. That makes the future look somewhat bleak, but I keep telling myself that worrying too much about the future can ruin your present.

    • deann-r

      June 14, 2023 at 9:32 am

      Thanks for the reply! Having supportive parents can be very helpful. It can also be challenging I think. Sometimes it’s a tough balance when you rely on them for so much, yet want independence at the same time.

      It’s awesome you have a good relationship with your sister. Is it hard having her so far away? Have you ever gone to visit? I know traveling can be an obstacle too.

      Meeting new people is tricky. At this stage of life I think most people have their friend circles and it’s difficult to break into that. Let me know if you figure out the secret!

      • anna

        June 16, 2023 at 3:51 am

        Tough balance indeed, but I think we’re managing. When they poke their nose too much, I do the adult thing and lie, so we’re all happy haha!

        Distance takes its toll on all relationships. I’ve visited her a few times, but traveling by plane is very tiring and stressful for me. She’s the one who usually comes back home for holidays, but now that she has two toddlers, trips aren’t easy for her either.

        The only tip I have so far for meeting new people is go out as much as you can. Not that I’m following my own advice with great success…

  • alyssa-silva

    June 12, 2023 at 9:12 am

    I definitely don’t take my family dynamics for granted. Like you, I have an older sibling. My brother Adam really took the role of big protective brother to heart. To say he keeps an eye on me would be an understatement. I’ve always told people having Adam as a brother is more like having a second father. And he’s my best friend.

    My parents have also been very present and supportive. For starters, I live at home haha. But we’ve always had a great relationship with each other. I come from a big, Portuguese family; we all love and are here for each other. I recognize this isn’t the case for many folks, so I never disregard how fortunate I am.

    • deann-r

      June 14, 2023 at 9:56 am

      For some reason I was thinking your brother was younger than you. How many years apart are you? There are enough years between my sister and I where we didn’t overlap in school. Not sure if we would be closer if we were closer in age or not.

      It’s great that your parents are so supportive. In the US it seems like once you’re 18 you’re on your own. In other countries though multigenerational living is more commonplace. I know you’ve written on this topic before. What are some of the best aspects of your living arrangement? Biggest challenges?

  • ari-anderson

    June 12, 2023 at 4:27 pm

    Sometimes to an outsider, sibling relationships can be hard to understand. It’s no different when a sibling has SMA. At times, when my sister and I were growing up, people sometimes thought that we were actually verbally fighting. In reality, we were just teasing each other in a lighthearted way. We both knew it wasn’t serious.

    Despite the teasing, we loved each other very much, and still do. Whenever one of us got in trouble growing up, we were always there to stick up for the other. Even though my sister has a family of her own now, we still stick up for each other in life. We also still tease each other, and revert back to being 8 and 10 years old when we see each other!

    • deann-r

      June 14, 2023 at 10:05 am

      Ha, ha. We had a rule that we couldn’t physically fight. That didn’t stop us from dumping glasses of water on each other. We certainly have those typical sibling dynamics you’re talking about. Thanks for chiming in!

  • alyssa-silva

    June 16, 2023 at 11:49 am

    We’re about 2.5 years apart which is nice. Because we get along well too, we have many of the same friends which has always been fun.

    I think the best aspect of living at home, besides having a roof over my head, is the comfort of having the two people that know me best care for me. It’s also nice not to have the stress of when a caregiver cancels on me last minute as this has happened many times in the past. Though I try not to rely solely on my parents. Unfortunately, these days I don’t have a choice. Finding help has been so difficult. This sort of segues into my biggest challenge. My parents are getting older. I’m getting weaker (or have gotten weaker). Balancing our health and managing everything has been challenging these last couple of years.

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