Monday, February 27, 2012

It's hard to find a community

I am not very active in MS support groups or organizations. It's not that I don't want to be, it's that I've had some pretty crappy experiences and it's hard to keep putting myself out there.

In 2009 I was a member of an online support group, which shall remain nameless. Things went pretty well at first, I got a lot of support in coming out of a flare that hospitalized me. But then I decided to start a family, and it all went downhill from there.

I've mentioned that I have had negative reactions to my status as a parent. And some of the worst reactions have come from other people who have MS. I think it must be a similar circumstance to why women are the harshest judges of each other - when you're already marginalized you seem to want to lash out at anyone who you feel maybe isn't AS marginalized as you.

In 2009, when I belonged to this online support board, I happily announced my pregnancy. And immediately was inundated to comments about how selfish I was, how could I do this to a child, didn't I care about my future baby, how irresponsible I was. And even some very direct and simple "you're a horrible person."

I was shocked. And as the insults kept coming, I also started to notice a distinct pattern to them. The people who insulted me were, by and large, people who felt that they were "victims" of MS. They were people who didn't share my outlook on life and who didn't have anything in common with how I managed my disease.

I am not insulting them. MS sucks. It really does. But my life is not defined by my MS. It has a severe impact on everything I do, yes. But so does me being fat, or being a woman, or being white, or being tattooed or any number of things. Something can be pervasive and have a huge impact on my life without my life being ABOUT it.

My life is about me. About my family. About being a wife and a mother. Before I was a mom my life was about navigating the world and figuring out how to have what I wanted. My husband and I had an awesome honeymoon in Myrtle Beach, we did everything we wanted to do, even when my wheelchair made it a bit more difficult.

But that is part of who I am.

I admit, when I was first diagnosed with MS I hid. I spent almost a year in my parents' house hiding from the world. I left their home only a handfull of times. I was embarrassed, I was angry, I was depressed, I was a victim of a cruel disease who took everything I had from me.

And then I decided I was done being a victim. I'm not trying to say I pulled myself up by my bootstraps or some nonsense. No. I was lucky because I had very supportive family members, I had a very good therapist, and I had my own stubborn attitude on my side. It was hard, but I did decide to change how I was living my life. I decided to stop hiding and I decided that I had the same right to a wonderful life as anyone else.

Some people never get there. Some people are not able to make the transition from "victim of" to "person with." Some people do not have the supportive family members I have, or the access to therapy and mental health services that I have. I am lucky, and I know that.

So these people who were at a different place than I, they insulted me because I was doing something they couldn't imagine doing. I was living in a way they could not imagine living. And while their insults hurt, they also showed me that I didn't belong there.

I have found a different community now. I'm new to it, but so far it seems to be full of people who are living with MS, not victims of it. There's even another member who recently had a child.

And when I announced my second pregnancy, the response was 100% positive.

It is sad to me that in small communities there is such division. It is sad to me that people with MS can judge each other so harshly. But it serves to remind me that I don't need to restrict myself to interacting only to people in my "community."

I have found many wonderful friends who accept me for who I am, regardless of my MS and regardless of my disabilities. These are friends who accept me as I am, even if they don't fully understand my disease they certainly try to be accommodating.

And that means the world to me. I have a network of people who love and accept me for who I am. Who celebrate my happiness with me and who don't judge me for anything but my actions. If I do something stupid, they call me on it. But when I accomplish something I am proud of, they celebrate with me.

Tuesday, February 14, 2012

Everyone Has An Opinion

I just found out that I am pregnant with my second child. Being the kind of person I am, pretty much the whole world knows about my pregnancy. I never could keep a secret.

This pregnancy is planned. This pregnancy is wanted. This pregnancy is also a bit controversial.

Because I am a disabled mom. Because I already have days where it is challenging to take care of my son. Because people have opinions on everything, and they seem to think it is their business how I and my family choose to conduct our lives.

So let me put some things to rest.

If you want to congratulate me, offer me warm thoughts and wishes for a safe and healthy pregnancy and birth? Please do so. If you want to provide me helpful and supportive comments on caring for a toddler while pregnant, or for introducing a newborn to a toddler? Please do so.

If you want to question my judgment, if you want to question my abilities, if you want to try and take away my joy and excitement? You can take a long walk off a short pier. You can shut the hell up. You can show yourself the door. Because I do not want to hear it.

My husband and I did not make this decision lightly. The fact is that we have been discussing the possibility of expanding our family for a year. We have had so many discussions and went over the pros and cons enough times to make your head spin. Because we wanted to be sure. Because we wanted to be honest. Because we wanted to make the right decision for our family.

Because that's what this is. It is about our family. And anyone who tries to make it about them is the worst kind of arrogant self-important jerk. I don't care if you'd have done things differently. You can do whatever you want with your own life. But this life is mine. And I will do with it all I can.

I am a mom to an amazing 2-year-old boy. I am pregnant with my second child. I am married to a wonderfully supportive and caring man. I am a disabled woman. IN THAT ORDER. I am a mom and a wife FIRST. I give everything I have to being a good wife and mother.

So if you want to question my decision to have a second child? Take a look at yourself. What kind of person questions the right of another to have a child? I am not asking for your help or your approval. I am not asking for permission from society.

I am telling you, point blank, that I am having a second child. And I will be a damn good mom to two kids. Because I am a damn good mom. And a good friend, a good wife, a good person.

My physical disabilities have a huge impact on my every day life. I have to do many things differently.  But one thing that my disabilities have no impact on is how I care for my child. The activities we do may be different, but my son is my world. He is always well taken care of and he is a very happy, loving, sweet and intelligent little boy. Everyone who meets him loves him. My disabilities have no bearing on that.

So. Let's recap.

I'm proud and excited to be expecting my second child. And if anyone has anything negative about it, they can screw themselves.

Wednesday, February 1, 2012


I don't really fit in to any parenting "boxes." I'm not sure why I would be surprised, given that I never fit in to any other "boxes" either. Even my MS doesn't fit in to a "box" which is always fun to talk about with my neurologist.

Because of my physical limitations, I have had to make decisions and compromises in every aspect of my life. I have learned how to navigate my challenges and I have learned how to quickly assess a situation and look for the best outcome. That's what I am always trying to achieve; not the perfect outcome, but the best I can manage. Living your life with a chronic, disabling medical conditions forces you to reach a point of acceptance. I accept that I have disabilities and that I can't always be the kind of person I want to be. But I try very hard to be the BEST I can be. Whatever my BEST may be.

I am not a "crunchy" or "Attachment Parenting" parent. There are things that I do from these "boxes" to be sure. But I do not fit the label and I am not really welcome in their secret meetings. I formula-fed my child, for one. I tried to breastfeed, but it was far too much stress and pain. I needed to go back on medications for my MS. I was a better mom because of it, you know, being that I could actually move and hold my child.

The list goes on. I stopped wearing him when he was young because he didn't seem to like it and it was more painful for me. He has watched tv from a young age because he liked it and it gave me something to do when I was up for hours with him. We stopped cosleeping because I needed to get more sleep or I was going to fall apart; I was getting to the point where I was in so much constant pain and could hardly move that I didn't want to live, let alone take care of a baby.

My point is, I did what worked for us, because being able to label myself wasn't worth more than my health and my sanity. 

But, well, "non-crunchy" parents and I don't really get along, either. I cloth diaper. I believe in natural childbirth and homebirth. I disagree with the practice of circumcision. We did baby-led-weaning; that is, my child was eating whatever we ate by the time he was 9 months old, and feeding himself to boot. We never let our child cry it out. he was cuddled to sleep until he was around 18 months old, when he finally decided he wanted to put himself to bed. I don't spank.

In every aspect of my life I follow whatever path works. I don't concern myself with labels, because there's no point. I can either do something or I can't. So I do things my way.

My child plays outside and gets filthy. Or he wants to watch "Queen and Mater!" and we chill on the couch.

I think my style of parenting could best be described as "balancing act." Some days it's about survival by whatever means necessary. I can't move well and I'm hurting, so whatever is going to get us both out of the day alive wins. Some days it's about doing as much as I can while I'm feeling good, so I play on the floor and invent games for us to play together. Most days it's in the middle.

I didn't realize it was going to be so hard to be a mom. Much less how difficult it was going to be to be a disabled mom. But I'm blazing my trail and doing the best I can. I look at the "boxes" around me, and I'm happy to navigate my way through them. Who needs labels? I'm already an outlier, so why change now?

It was hard to accept my MS diagnosis almost 6 years ago. But since coming to terms with it I have learned to be a lot more comfortable in my own skin and I have learned to be a lot more accepting. I know who I am and I know what I am capable of. It really doesn't matter what anyone else thinks or does.