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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 3 replies, 4 voices, and was last updated 9 months ago by Halsey Blocher.

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      • #17774
        Jennifer Lewis
        Participant

        As a 51-year old woman, I’ve had some fascinating experiences dating. My teen years were lonely and I always felt left out of things because my friends would date but I didn’t think any guy would be interested in me. If I’m being honest with myself though, I was my own worst enemy. I was a total wallflower (where did that term ever come from, anyway?). Being in a wheelchair kind of does that to you though.

        Then I went an hour away to college and, like most college kids, I colleged HARD. Classes? Who needs that?! I had friends and they had male friends. Since these guys were stuck living “with” me they got to know me. Don’t get me wrong, it took a while before I gained enough confidence to truly put myself on the market, but once I did I was off to the races. For the most part, I dated some decent guys. I was never physically taken advantage of but mentally it was sketchy. I mean, like most males in their early 20’s they tend to be focused on one thing and one thing only. It took me a long time to get to where I thought I was ready for “more.” Looking back, I know I was far from ready, but I did what I thought was the right thing for me at the time. I’m not going to beat myself over it.

        I’ve had three serious boyfriends in my life. By serious, I mean relationships that lasted more than a few months. The first was my “first,” if you know what I mean. I was with him for about two years. Boy did he ever mess with my brain! Right around 2007 he emailed me (I have no idea how he found my email… computers were in their infancy when we broke up) and he told me he was sorry. I told him thanks and said I had forgiven him long ago. My next b/f came into my life like 3 or 4 months after my breakup. That relationship lasted nine very long and stressful years. He lied, cheated, and made me crazy for all but our first year together. Why did I stay? Sadly, I thought he could change and I was too invested emotionally (and physically… he did all my caregiving, which I don’t recommend). It’s funny how bad relationships make some of us want to stay even more.

        Now, I’m with the most amazing human being I’ve ever met. I had just created a FB group for people living in my town and he joined the group. He didn’t live in my town but he did work here. While he was the first to message me, I was the one who asked him out. It was right around this time of year in 2010 and I was feeling bold due to a couple of beers… lol! He (his name is Frank, btw) agreed and we met at Cracker Barrel. The second we made eye contact it was kismet. We spent the entire day hanging out. At the end of the day we were dying of thirst so we went to Buffalo Wild Wings. We each got a pop/soda and when we were ready to leave out server said there was no charge. I took that as a sign. We have been together ever since. Now, we aren’t married, and I doubt we ever will be because of Medicaid, but he’s my man. There are several reasons as to why I feel we have been so happy together. Most of it has nothing to do with my disability. Mainly, we just have mutual respect for each other. I think all my past relationships made me appreciate him much more.

        Now, my advice:

        1. Don’t ever give up hope. If you haven’t found that person yet it doesn’t mean you won’t.

        2. Don’t settle. When someone makes you miserable don’t stick around.

        3. Don’t depend on your partner for all your caregiving needs. It’s just not romantic. Sometimes it’s okay, but don’t make it part of your regular routine.

        4. Lastly, DO love who you are. Everyone has their good and bad parts (and you thought you were special, didn’t you? Teehee).

      • #17781
        Kevin Schaefer
        Keymaster

        Thanks for sharing your story Jennifer. I’m glad that you found the right person after some not-so-good relationships. The advice you shared here at the end of this post is great.

        Similar to you, I had confidence issues when I was in high school. I’ve always been very outgoing and social, but I didn’t see myself as dateable then. I went to prom and school dances with dates, but I didn’t really try to start dating until college. My confidence definitely went up then, and I became comfortable with going on dates and having girls drive me in my minivan. Right now I’m at the point where a lot of friends have moved away and we’re all career-focused, but I am looking. I have confidence in myself and my ability to date, and that makes a world of difference.

        Also, this is a really good book on this subject, written by a fellow writer with SMA: https://www.amazon.com/Sickness-Health-Disability-Understand-Interabled/dp/0807058548.

      • #17791
        DeAnn R
        Keymaster

        As Kevin said, thanks for sharing Jennifer. They do say you have to kiss a few toads before you find your prince. Glad it sounds like you’ve found yours even if it took a while. Great tips too. I’ve never really put myself out there, which I’m sure is why I’m single, but I’m ok with that. Love hearing what’s worked and what hasn’t for others.

      • #17812
        Halsey Blocher
        Participant

        Love your story of meeting the right guy for you! Third time is the charm! Also, really great advice! I especially love #2! I’ve always said I would rather be single than be with someone that’s crazy or that I don’t love/doesn’t love me.

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