Wednesday, March 6, 2013

On family dynamics.

This is my family on Easter in 2010. 
It may surprise you to learn that my mom has M.S.
This is probably because I've only mentioned it once really, in passing, early on. Twice if you include this emo ramble, as well.
Also, I sadly realized (in writing this post) I don't think I've ever even posted a photo of her on here. Daughter-of-the-year right here. 

I wanted to write a more thorough post about it, and her, for posterity. So I don't look back on my life and regret editing my mom out of it before she was even gone. I use this turn of phrase because I find myself saying things (and writing things in blog posts) like, "we went to my dad's house," which, I realize to those of you who may be new readers or who never delved back into the archives, makes it sound like I don't have a mom or that my parents are divorced. 

She's been on my mind more and more lately.. and I'd be lying if I said my wedding doesn't have something to do with it. I'm just going to say it:

It gives me anxiety that on my wedding day, people who have never met my parents will look at my family and pity us. (and yes, I hate that I even think this.)

Don't mistake my anxiety for being ashamed or embarrassed of her. I'm just protective of my family. My personal life. It makes me anxious to put it all on display.  

It's not that I obsess over the thought, but when it pops into my mind, I start to sweat a little. 
Obviously both sides of my family know the current state of my mom's condition, and I think most of my friends and M's friends know, but not everyone has met her. All it takes is a 'look' and I'm suddenly reminded who knows, and who doesn't know.

The same few questions have always been a consistent part of my life:
"How's school?"  (up until law school graduation)
"How's the guy?" (the guy, up until M obviously) ... and then, I know what's coming. Their head softly tilts to the left, their eyes soften, and they ask:
"How's your mom doing?" 

I have always found this question kind of strange and hard to answer.
Well, she has an incurable degenerative disease. So. She's not doing so great?
On the other hand, considering she's had it for over half her life, the better part of 25 years, she's doing pretty good? In terms of the speed of its progression.
I also have to gauge how much of the truth they want. People want to feel good about asking, and maybe they're being sincere, but I've found people prefer a thinly veiled version of the truth. They don't want to hear about bed sores and colostomy bags.

The photo above if a bit misleading, as well. It's is nearly 3 years old. Things have changed since then. My mom can no longer really hold her head up on her own, and she has a PCA that stays with her at our house during the day while my dad works who feeds her and keeps her company. Her memory isn't that great, and she doesn't talk a whole lot. When she does, she sometimes repeats herself or doesn't  make sense. She also brings up the past a lot- often asking if I still have my childhood stuffed bunny (I do.) and things of that nature. It's tough for her to keep up with and really be aware of current happenings, both in the world and in our families, so she falls back on the past. A hospital bed, deemed better for her bed sores, has replaced the twin bed she slept in. Mostly, she lays on a special mattress pad on the couch and watches TV.

It's a part of my life, I don't feel sad about it because it's all I've ever known. What I've struggled with lately is our relationship. I read a handful of blogs written by girls who have lost a parent to illness. I feel like an ungrateful brat 60% of the time because my mother is still here, and I don't have a great relationship with her, nor do I feel like I handle her illness the best I could. I'm not out there raising money for M.S. (because I feel like I'm not a good poster-child as an advocate) or doing the M.S. 150. More than anything, I fear looking back on our relationship with regret. I know this sounds ridiculous because she's still alive and there's plenty I can do to change that, but only to a degree. I can't really have meaningful  conversations with her anymore... isn't that how you create a bond in a relationship? Communicating?
(at a wedding in April, 2010)
You may wonder why I hadn't cultivated a relationship with her prior to the degeneration of her mind. Growing up, my mom was always the "cool" mom. The one who would pile 5 of the neighborhood kids into the back of my dad's covered pickup truck and drive us to McDonald's so we could play in the play place. She'd make Target trips during the day while we were at school and buy us the new Backstreet Boys CD.  Our yard, perfectly flat and level, was always the center of neighborhood games of Black Bear or Red Rover, and my mom always called a time-out for freezees. There were always heaps of freezees or other ice cream treats in our freezer (as well as fruit roll-ups, dunkaroos, fruit by the foot, gushers.. etc in our cupboards. No, I did not eat healthy as a child). I could use no other adjective other than "idyllic" to describe growing up in my neighborhood, and with my mom. I don't want anything I say here to be misconstrued, I love my mom. I always have. That being said, I have always truly been a daddy's girl.

There was a turning point in my relationship with my mom. I vividly recall the day it happened. I was 14. I'm not going to get into details, (I know, I know.. I always eye-roll bloggers who give you a snippit and then don't share the details. "why even mention it at all!?" I think. I mention it because I feel like I need to make note of it in this unofficial record, to justify to myself what happened.. to alleviate some of the guilt I feel as an adult for the shift in our relationship. Because there WAS a reason at the time), but it was from that point that I began to see her differently. I felt like from that point, I took on more of a "parental" role in our relationship. It changed the way I looked at her: based on decisions she made and people she associated with. It was the first time anything had jaded that "parental" image I had of my parents. You know, the one where they know best and the decisions they make are infallible because they're your parents and they just have to be doing the right thing. I lost respect for her. I flat out started to resent her for a period (I wouldn't say I feel that way anymore). Through all of this, I grew closer to my dad. (I realize re-reading that paragraph it certainly sounds like there was some sort of infidelity, which is definitely not the case, and while I still don't want to get into details I want to make it abundantly clear it was not that.)

I wouldn't have classified our relationship as outwardly "strained" at this point, but while most young girls are forming a bond with their mother... doing things like shopping, dining out, confiding in them; I was not. I'd say it was a combination of my mom's inability to physically do these things, and the aforementioned "turning point" that culminated to cement our not-closeness. With the exception of a few screaming matches (like any normal teenager), we were never outrightly rude to each other. I was (usually) well mannered and polite with her. We just were never exceptionally close. We'd spend time watching TV at night, chatting, but it was all pretty superficial. I have some friends that told their mothers evverryyythinggg, including the nitty gritty regarding boys. That just wasn't my mom and I.

I went off to college for 4 years (2 hour away from home), and came home in the fall of 2009 to begin law school. I lived at home the first 2 years, but my intense schedule and hours kept me physically out of the house a lot. This might be me making excuses, but that, coupled with the fact that I was 23 and now living at home again did not lend itself to a great relationship with either parent. Once again, things weren't bad, but there were daily quips about whether my mom "needed to watch Wheel of Fortune everyyyyy day at 6:30 NO QUESTIONS ASKED" (which just fueled a deep seeded hatred for Pat Sajak). It was a lot like it was back in high school. Lots of sitting in front of the TV, no talking. She had reached a point by then though where, as previously mentioned, we really couldn't hold a substantive conversation due to her memory/speech issues.

I live with M now, obviously, and while I get over to see my parents quite a bit, I only really do so when my dad is home (vs. at racketball, or working). I struggle with taking the initiative to go over there when my dad's not there, because all it would entail with just my mom is me watching TV with her in silence. I'll admit I haven't always been the most patient with her. When I ask her questions and she repeats herself or spits back something that doesn't make sense, I quit trying. I'm not rude about it, but when they don't retain what you're telling them, or you're not sure what they will retain, it's hard to find things to talk about. Also, lady loves herself some naps. I've been over there and will ask her something only to look over and see she's passed out cold mid-conversation. I need to be better about making time to just go sit with her, because I know she appreciates just having someone there who is not her PCA.
I don't really know how to wrap this up. Which is fitting because I never know how to talk about my mom. As I mentioned, I feel like I don't handle it well. I love her. I really do. It's just a strange situation. I say strange because I know plenty of people my age who either have perfectly healthy parents, or parents who have cancer or similar illnesses. I know all cancers are very different, and some people battle it for years, but the symptoms are so wildly different from M.S. I have nobody to really relate to when it comes to what she's gone through. And the 2 or 3 times I've heard of people my age who have a relative my mom's age with M.S., the stages of M.S. are still so wildly different. We have a family friend who is 10 years older than my mom and still walking with a cane. That's the thing about M.S., and why it's so awful: it impacts people of different ages, at different paces, and with vastly different symptoms. There's not a lot of treatment available, and the treatment that is available is just to slow its progression (that is if it actually works). At times it feels a bit like I'm talking to someone with alzheimers. Memory loss is a common symptom associated with M.S., and while it's not nearly as bad, it's the best comparison I have. I'm not sure what she'll remember, and she's sure to ask the same question a few times over (Like when we're getting married. If I've bought my dress yet, etc.).

I guess I don't really have a point to this post, other than to put it out there. To maybe explain to others and to keep a record for myself. Family is a funny thing, and we always seem to know what to do, or how we'd handle situations when analyzing someone else's family, but our own families are a differnet beast all together.

Next up in this depressing series: Daddy Issues: An oldest/only daughter's constant desire for approval. (just kidding. sort of. I didn't know how else to end it, so why not a wildly inappropriate joke?!)


  1. Wow girl. I imagine that was difficult to write. This is not nearly the same but my grandma has parkinson's and she isn't really able to move and more recently her mind has started to go. She asks the same questions over and over, has no short term memory and FREAKS out when there are commercials on TV because she thinks someone changed the channel. I know it's different, but I can relate, at least a little bit.

  2. I'm sure that wasn't easy to share but I really appreciate that you did. My mom has suffered from fibromyalgia, food addiction and depression since I was about 7 years old and it's hard to develop those relationships when illnesses get in the way. I talk to my mom a lot but I have lost a lot of respect for both of my parents when reality set in that they are human and have made terrible lifestyle habits with no regard for how it influences thier kids. I am living with them now while I pay off student loans and while I appreciate the opportunity, it's definitely hard on our relationships. I hope your wedding day is simply filled with love, no pitty. I hope you will be so happy that day that none of that will matter :) Thanks again for sharing your story!

  3. Your relationship with your mom has gone through a lot of different seasons... and the current season sounds really tricky. Hang in there.

    Thanks for sharing all of this... can't imagine how difficult that was to do.

  4. I just got the overwhelming urge to text message you, but since I don't have your phone number, I resorted to a blog comment. Yeah, 'cuz that's the same thing.

    Regardless, I think that the fact that you can look at yourself/your relationship with your mother and realize that it's not the best (or all that others seem to have) is an immense learning experience for your future daughter (should you have children and one+ happen to be women). It shows great maturity on your part to be able to reflect and point out your lack of patience (preach it, sista, I'm horrible at patience too), or the fact that you have no idea what to say to your mom sometimes. This doesn't make you a horrible daughter at all, it makes you human.

    [BTDubs, my dad has absolutely nothing wrong with him, and yet he passes out in the middle of conversations too. I blame age. ;)]

    This is all just to let you know that your compassion and heart are great, and it's very clear to us that your self-reflection shows it. Just know that we're thinking about you, sweet friend.

  5. Thanks for sharing this story, I had no idea about your mom (I'm one of the people that is too lazy to go back into the archives digging).

    I also don't have the greatest relationship with my mom and envy those that do. My mom doesn't have an illness (or at least one that is documented and treated for) but we do not see life the same way. I like to think of myself as a positive person 90% of the time (I'm human and have those "off days") and I feel like my mom tries to find negative things in life to dwell on. Sometimes I hang up the phone after a conversation with her and feel angry that she has put me in a bad mood when I was in a great mood before talking to her. Unfortunately, I have adopted this habit and sometimes do the same thing to my hubby and I hate it and he hates it even more. I try not to play that role and hope that I'm never that person to Bailey! I would be upset with myself if I ever was!

    Anyways, I can't relate completely since I do have some good times with my mom and I'm sure it's been many years since you can say that you had a great time with yours. Your mom seems like she was a fun lady before her diagnosis. I'm sure this has been very stressful on you and your family. I truly can't imagine!

    You're an amazing person and have accomplished so much already!

  6. Sometimes it seems so much more patient with people who aren't in our families who we don't also love deeply. I think it's wonderful that you're being so honest with yourself and with her. Although it sounds very different from my relationship with my mom, I think you're incredibly strong for keeping a relationship with her nonetheless. Stay strong!

  7. wow. your ability to be so transparent is inspiring. i kinda want to give you a hug now. [and not an "i feel sorry for you" hug, but a "you are seriously awesome!" hug.] i can understand your feelings to an extent as i've experienced my bf's up and down relationship with his mother, who also has been diagnosed with MS. it's a touchy subject and i used to get so frustrated with him and insist he make more effort and go out of his way and do this and do that; and then i just had to take a step back because it really wasn't my place, even though i wanted it to be. :P i didn't know of their past, i didn't know of the personal relationship [or lack of] that they'd had his whole life. so instead, i just support him through it.

    i admire your honesty and your desire to make things better between you two, and i think that's what it takes. i wish you the best and hope that when it's all said and done, you can make peace with your relationship and i also hope along with you that you won't have regrets. life is a tricky thing, you know? just go with your heart and believe in yourself and believe in her. all the rest will fall into place. :]

  8. Thanks so much for sharing this. I remember you mentioning that your mom had MS when I wrote about my dad's cancer diagnosis. You are right that they are both sad circumstances, but very different! I've felt alone at times with what I'm going through, but I do know many other people who's parents have cancer, but MS is a little more rate. I hope eventually you can have peace in your heart about your relationship with her. It's a good sign that you are thinking about it now, because like you said, it's not too late!

  9. Kell-
    I'm sorry that your relationship with your mom is hard. You're not alone in that, it's the variables that change among us though. It's gotta be so hard to have a circumstance where your relationship changes, but then she has a physical illness that distances you further. And I hope you don't feel guilty about that. It's a hard thing to go through and there's no good way to handle it. I can tell you that my dad had a long hard road with alcoholism and I didn't have any relationship with him. The last few years he reached out but I didn't want to deal with it/didn't know how to build a relationship with him and then he died. Do I regret not talking to my dad at all the last few years of his life? Yes. Would I have done anything differently? Probably not. I still think I handled the situation the best way I could for me and that's what you're doing too.
    I'm sorry that you're thinking about this during such a special time though. Your wedding is going to be beautiful and your mom-even if you're not sure she gets it-is going to be so happy for her little girl. Even if her memory is bad and she doesn't talk so much, she probably understands more than you realize. But I completely understand why it's so difficult to connect with her.
    All I can say is hang in there. Follow your heart.

  10. Kelly, this is a GREAT post. I bet it was hard putting this out there but really glad you did. I do often wonder when people don't mention their parents much, like where's mom and dad?! I too... have different and ODD relationships w/ my parents, BOTH parents. Its not ever something I would put on the blog as A. my Mom and her friends read my blog and B. people that are close to and know my dad also read it- so I keep it off. My hubby tells me weekly that i NEED to write a book about my family. but i am sure we could all write books about our family. ill just wrap up my comment by saying that i will try to do everything with my daughter that mt mother did not/does not do with me :)

  11. So I just shed a few tears while reading this. It was so well written. And honest. And it solidified why I like you so much. You're a great person, inside and out. I will say a little prayer for you around the time of the wedding, that your anxiety over your family dynamics is lifted, and that you feel an overall peace on your and Matt's special day.

  12. I too teared up, and I know you arent looking for that, but my heart hurts. Its something I am not familiar with, but my mom passed from cancer so its a loss I know... I think its good you documented your thoughts on it... There is still time to make it whatever you want it to be

  13. I love the honesty in this post. And love what Sar said about how your feelings about it don't make you a bad daughter, just human. So true. I didn't know about your mom, and - i feel dumb for saying this - had no idea how much MS could progress. I have an acquaintance with MS, but she is about my age, and she doesn't seem THAT much different than the rest of us. (She's recently diagnosed, though.) I did think of Alzheimer's before i got to the part where you mentioned it, and i also thought of my grandmother who is very very hard to communicate with b/c she had a stroke 15 or so years ago & it's left her w/o the ability to speak. She can but it's VERY hard to understand. And she loves watching TV - so loud that you can hear it word-for-word across the house! Ahhh!

    My mom and i had a terrible relationship growing up, as she is bipolar and severely depressed. Back then, she didn't believe in meds to help that kind of stuff... so there was (verbal/emotional) abuse. But she has since gotten on medication & miraculously, our relationship is so good now that i am in my 30's. But it was TERRIBLE in my teens & twenties. I hated her, honestly. Thankfully she got help. And i am SO grateful for our relationship now! But it is sad that she didn't get help while i was young, b/c some of the damage could not be undone.

    Anyway, i don't know why i went into all that - it's nothing like what you have gone through w/ your mom, and i can't imagine. I can imagine, actually, but I'm sure it doesn't come close. And I can't imagine handling anything any differently than you have. You have done well, and i'm not just saying that! {HUGS}

  14. WOW, what a raw story.

    Thank you for sharing, it really puts life in perspective!


  15. Kelly,
    I meant to comment yesterday but work got in the way (ugh, work!)

    I just want to say that your post made me tear up. I cannot imagine what you have been through with your mother's MS. I know everyone has unique and at times tough relationships with their parents and it's normal. I am so glad that you are able to see that you need and want to try to develop a better relationship with your mom. My dad passed away in 1999 when I was 18 years old and one thing that I like to tell everyone who has parents that are still living is that you need to look at each day like it could be the last with them. I am sure you already think about that possibility since your mom's health isn't 100% but it's always nice to hear that reminder as I need it often myself. Take care. Hugs to you!

  16. Wow, this is so honest, and real. Thank you so much for sharing!

  17. Amazing, amazing post Kelly. Thank you for sharing.

  18. I just sent you an epic e-mail, but thought I would comment too because... who doesn't like comments?! Thanks for this post :)

  19. So, I don't know how I even got this far into your blog without seeing this post! Because girl, I SO understand you!!

    First of all, when my mom was sick, it was hard for me to explain to people that she couldn't or wouldn't be participating when other mother/daughter duos were shopping or doing whatever it is that moms and daughters do.

    Also, my mom was only seriously/gravely ill for a very short period of time - but what exactly do you say to someone who really doesn't get/care/understand what you are saying? The best advice I got about this was to just say what I wanted to say. Do crafts I wanted to do, talk or watch the shows I want - because although she couldn't really give the feedback I wanted or needed, it was "good" for her to know that I was there, and happy, ya know?

    Also, hugs to you for dealing with this and taking it all in stride. I know that even thought it's just life to you and there's really no other way to deal with it, it TOTALLY sucks.

    Hugs. Sometimes life is totally unfair.