The “Special Needs Family”

Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.

But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.

Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…

I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.

Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?

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5 thoughts on “The “Special Needs Family”

  1. “I know Mom is not in the best shape and I don’t want her friends to see her like this right now.”

    My first reaction to this statement is something like, “Why is it your job to protect your Mom’s friends?”

    And my second is something like, “What does your Mom want?”

    You can’t manage other people’s expectations and beliefs. If you try to educate everyone you come into contact with about MS in general and your mother’s MS in particular, you’re going to drop dead of exhaustion and they still aren’t going to be any wiser. You can’t worry all the time about what other people think. It’s exhausting, worrying about it doesn’t change it, and a surprising amount of the time people aren’t even thinking what you think they’re thinking!

    This is your Mom’s new reality. If these friends aren’t very important, and your Mom never plans to see them again, fine, they don’t need to know what life is like for her now. But if they are actually friends, then they get to do the hard work of understanding that their friend, your Mom, has had some changes and this is what she is dealing with, this is who she is and this is her life. That’s what friends do.

    • You are so right. What is interesting is I read your words after you wrote them and over the weekend as we attended this wedding I could feel them coming to life- almost as if you I had your words guiding me through everything as people asked about Mom and I didn’t sugar coat it. I realized that these friends are important to her and therefore they need to understand what is going on with Mom. It is how my Mom would want it and it’s not my job to protect anyone or shield anyone from our reality. It’s what it is, our reality…and like you said friends need understand this if they are important and close friends because that’s what friends do. Thank you for this comment because it is still sitting with me and I am still thinking about your words days later.

  2. Almost 30 years since I first met a neuro, I agree with your observation. My theory is it’s because they cannot cure anything, a profession for medical people who cannot handle success or failure.

    I agree wit the above reply it’s about your Mom, not you. Our daughter years ago gave up trying to explain.

    Caregivingly Yours, Patrick

    • Thank you Patrick. I have often thought of your family navigating through all of this and wondering what you all would do/say/or act in the different situations we encounter. It is about my Mom and what she wants and I can’t shield the world from this reality and especially not people we consider close friends. This is who we are now.

      Ironically, my parents have a standing appointment today with Mom’s neurologist to get results from her MRI last month and I am curious what the doctor has to say. I find comfort in knowing others have similar experiences and it isn’t just us who seem to not be having any luck. Thank you as always for your support and your thoughts.

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