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?
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| (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?!)
