Changes

My 2 year old is in the middle of potty-training right now. I should note that this was really more his idea than mine. I have been pretty unsure of how to go about this potty thing, and early attempts failed miserably. Most of what I have seen/heard/read about has been stuff like "sit your child on the potty every 20 minutes!" and that sort of really involved stuff.

I am not in to "really involved." I don't have the physical or mental stamina to get in to constant battles of will with my son. Which isn't to say that I let him run around like a wild creature and do whatever he pleases in an undisciplined fashion. No, its really more that I pick and choose my battles wisely and trying to make him sit on a potty every 20 minutes was not an undertaking I was willing to commit to. 

Instead, he started telling me when he was "soaked" and wanted "new dopper" (new diaper, for those who don't speak toddler.) And then he started asking to use the potty. No, seriously. He'd ask me to take his diaper off and let him use the potty. We had bought his potty about 6 months ago, when he initially started showing signs that he might be ready. So he knew what it was and had become accustomed to its presence. 

Once THAT happened, I was like "well, it's now or never..." and one morning I just took his diaper off and said "Ok, when you need to pee, you go in the potty. We don't pee on the floor." My son answered "No pee floor. Pee potty." And then... uh, went and peed in his potty. 

I have been living the past week and a half in shock. He's had accidents, yes. He's peed a bit on the floor a handfull of times. But mostly? He's potty trained now, when we're in the house. I haven't exactly braved taking him in public yet.

This has been awesome. Mostly because I don't have to lift him on to the changing table 12 times a day. Nah, only 3 times a day now. (He still wears a diaper for his nap, so once to put it on and once to take it off. And then he wears a diaper to bed.) This is huge. Though I am dumping his potty out a million times a day, but at least that's less effort.

This whole experience just makes me wonder how different this went for me and if my disabilities are playing a role. My son has been following directions and simple requests for a long time now. He is frequently asked to do things for me (can you pick that up? Can you move that? Can you take this to your table?) And he's really awesome about doing the things he's asked to do. 

So he has taken a big role in his pottying adventures. He lifts his liner out once he's peed and brings it to me. Which is not always that awesome, as he has spilled a few times. But I do appreciate that he is trying to help. He puts it back once I have emptied and cleaned it. He alerts me if he has had an accident, and will show it to me. "momma, I pee floor. clean up." He'll even try to help clean up if I'm not careful. 

Part of me wonders if he's taking on too much responsibility and whether or not I am inadvertently damaging him.

But then he spends so much time in my lap, cuddling me and hugging me, saying "awww momma! mine momma!" that I figure... well, he's happy and for now, for this moment, he absolutely adores me. I must not be screwing him up too bad. 

I don't think his toddlerhood so far has been all that different. He runs and plays and talks and learns... he changes day by day. And I do my best to keep up. Even when I am very sick from my pregnancy and even when I have no idea what I'm doing.

I'm just trying to keep up. And I think I'm doing ok, so far.

My House is a Mess. And I Don't Care.

I haven't posted in awhile. Being pregnant is a special kind of difficult. I knew this when we decided to have a second child. My first pregnancy was rather difficult, and that time I didn't have another child to worry about. I was able to sleep 18 hours a day the first time around. But this time my son actually expects me to be the same momma I've always been. It's a lot of extra pressure.

On top of that, my MS hasn't let up the same way it did the first time. When I was pregnant with my son I almost felt like my MS entirely went away. Aside from pregnancy ickiness, I felt better than I had in years. This time? Yeah, not so much. I am in just as much pain and have just as many issues as I did before.

Basically, all of this means that I am doing even less around the house than I used to. Look. My house is always messy. There is always clutter and toys strewn about the floor. And, really? I don't care.

I have a limited amount of energy. If I overdo it, I am left unable to move. This is my reality.

So I decide what I want to do. Do I want to clean up my house? Or would I rather make sure I have enough energy to get on the floor and play with my son? Do I want to put away toys? Or do I want to take my son to the park?

It's really an easy decision for me. I'd rather spend the energy I have being Momma. I really don't think that a perfectly put together house is as important as my child(ren) knowing I will always play with them or take them on small adventures.

I know I have limits and I know that my child(ren) will have different experiences because of my disabilities. But I do my best to limit how impacted they are.

Frankly, anyone who wants to judge my house can suck it. It's not dirty, it's not dangerous. It's messy and cluttered. But there's a really happy little boy who lives here, who asks his momma to come play blocks. And she goes to play blocks. The dishes can wait. Picking up toys can wait. Because he's only going to be 2 once. And I want to savor these days where he actually wants to play with me.

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.

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.

Boxes

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.

"How Do You Do It?"

When people find out I have MS and a child, there's a pause. A look of disbelief, a look of confusion, and then the dreaded question "How do you do it?"

I never know what to say. I hate the question. It's not that I mind talking about my life or my disabilities. I don't. I want to educate people and help them understand. It's just that I don't know what they are asking.

How do I do... What? How do I deal with being disabled? How do I deal with being a mom? How do I deal with life?

Usually I end up saying "I just do." Because really, what else is there to say? If people have a specific question, I wish they'd just ask it. Because trying to explain the whole of my existence when put on the spot is impossible.

But, here. I'll try. "How do you do it?"

I decide what is most important and I focus on that. I live my life by routine. I prepare as much in advance for the day as possible. I don't have expectations of the day. I do it one minute at a time.

When I became a mom I decided that I was going to practice "child led parenting." I decided that what was important to me was that my child feel secure and able to make decisions very early on. I decided that I was going to follow his lead and not try to make his needs fit in to my schedule. 

In practical terms, this just means that I "go with the flow." I don't try to direct my son's activities. I don't, and never had, him on a feeding/sleeping/playing schedule. As a 2 year old, my son tells me when he's hungry, when he wants a drink, when he wants to sleep. He tells me what he wants for breakfast and lunch. I am not in charge of planning these meals, only of making sure we have some of his favorites on hand.

If he wants to play with his cars for an hour? I do not try to direct him to something else. I really only intervene if he is doing something dangerous, if he is hurting me or one of our animals, or if he is getting in to something I do not want him to (my drink, for example, or our dvd collection.) Other than that, he really has free reign.

I am the opposite of a helicopter parent. I do not ignore my child, but I am quite at peace with sitting in my chair or on our couch and letting him run and play freely in our home. When he is in the mood to play with me, we play together. He likes to have me draw for him, for example. So I draw, I teach him shapes and colors. And when he wants to run off, he goes. I am not uninvolved... I am simply involved to the degree that HE chooses. In fact he's pretty fond of telling me to "Go Away" when I am trying to insert myself in to his play.

My son is very independent. This is something that I tried to encourage and foster in him. He knows I am always there when he yells or cries for me. In return he seems to have the confidence to try things on his own and not have to be by my side every minute.

My/our "Routine" is not to be confused with a schedule. It is not about time, it is about the way we do things. I always make up 5 diapers when I first get up in the morning, that way they are ready to go when I need them. I remake them as I run out. I always change my son in the same position in the same room. Because I have everything set up the way it is easiest and most efficient for me. I hate changing him anywhere but home because I get flustered when things aren't where and how I need them. It takes extra effort and energy, which I prefer not to expend.

I pretty much have a routine or preferred way of doing things, for everything in our day. How I get food ready, how I get him dressed, how we take a shower... It's always done the same way, because that makes it easier for me. I think it makes it easier for my son to know what's coming, too. 

I don't make a lot of plans. We just go with the flow and do whatever we need to do. I find it is easier to plan an hour in advance than a day in advance. I can better judge my son's mood, how I am feeling, what our abilities are... It's just easier to know what I think we can accomplish.

"How do you do it?"

I just do. At the end of the day I am exhausted and in a lot of pain. I am short-tempered with my husband, because I work so hard during the day to not be short-tempered with my son. I give all I have to being a mom. That's what matters to me. When I feel that I'm at the end of my rope, I just look at my son and I hold on.

That's how I do it. Because I made the choice to become a mom, and so I have to uphold my end of the bargain.

The Look

Something I've never gotten used to is The Look. The Look happens when I pull my van in to a disabled parking space, and people look to see who is driving. The Look happens when I get out of my van and people see that I am not elderly. The Look happens when I then climb in the back to get my child out of the van. The Look happens any time that anyone else is judging whether or not they think I am disabled, or they wonder what my problem is.

The Look says "how dare you?" How dare I take up this parking space, I am not old or in a wheelchair. How dare I have a child if I'm supposed to be disabled. How dare I be out in public, taking up space and living my life. How dare I be in their way.

I move slowly. I move purposefully. I try to conserve movement and energy, because I never know exactly how much I have or how much this trip will take out of me. And The Look says "you are in my way, my time and my life are more valuable than yours."

Because of all this, I also move at the pace of my child. My son is 2 year old. He is also quite large. He is 36-37 inches tall and weighs 38 pounds. He is 97th% for height and 99th% for weight. While I can pick up and carry my son, it is not something I want to do often in public. I don't like to carry him far, or when I have nothing to brace against. He puts me off balance and I do not want to drop him or fall over. I only pick him up and carry him when I must. I conserve my energy for just that reason. I always want to be able to carry him if it is necessary.

My son is accustomed to this. He does not ask me to pick him up unless he needs me to. He is awesome at holding hands and understands how we behave in public, he knows our routines.

So we walk at his pace and at my pace. Holding hands across the parking lot, ever vigilant for cars not paying attention. And then we pause inside the store, where I get The Look again as I catch my breath and start the process of getting my child in a cart.

It is not an easy process. I put everything in the cart first. Then I have to convince my son to help me get him situated. He doesn't always like the cart, but it is imperative that he sit in it. So we talk. And I get The Look as I am bargaining with my 2 year old about this. They don't understand. If I pick him up against his will he's going to flail and twist and I am afraid I will drop him or hurt him or fall over. I need him to be cooperative, because that is the only way I can do this safely.

When he agrees, he lifts his arms up and keeps his legs slack. I say "1-2-3-Lift!" and he pushes off with his legs so I get added help from him. He stands in the seat of the cart so I can pause and evaluate. He helps get his legs through the holes and finally, we are done. I thank my son for his cooperation. Which usually gets me another Look. Then I lean on the cart and we go about our business.

The Look is being judged for trying to live life with my child. We do not do things the same way. My 2 year old has a lot of responsibility in his life. He is expected to do a lot of things and to help with even more. Part of why this works is because I treat my son with as much respect as I treat another adult. I keep him fully aware of what my expectations of him are. I thank him when he does what I've asked or when he is helpful. I bargain with him to get the desired behavior. I completely ignore his tantrums because I haven't the energy to address him when he is in that state. I am known for saying "I know you're upset, but this is how it is. When you can talk to me, we'll figure this out."

I hate The Look. Because people have no idea what it is like to live my life. They make judgments based on their biases. They don't even try to comprehend that life may be very different for someone else. I do not give in to my son, and I am not too strict with him. At home, he pretty much has free-reign to do whatever he wants. He knows this. Because at home I can sit in my chair or on the couch and interact with him without worrying about if I'll have enough energy to get us back home safely. At home I know that everything has been made safe for him and I know what he can get in to. At home I have arranged things to be easy for both of us. At home I am in control of the variables.

In public, I am not. In public I am at the whims of everything and everyone else. I don't know if what I want is at the front or the back. I don't know if I'll have to spend time searching for what I need. I have to deal with my son getting distracted and wanting to do other things. I have to be prepared for standing in one place in line, which is harder than walking. I have to be aware of so many more dangers. I am on edge and I'm also getting The Look constantly.

If you've ever given The Look, I just want you to know that I feel it. I'm sure other people feel it, too. I feel your judgment. I feel your scorn. I feel your dislike. And I want you to know that I deserve none of it. Maybe you'd like to live in constant pain with your muscles spasming and your movements being stilted and jerky because your brain can't send signals to your limbs? Maybe you'd like to feel unsteady on the ground because your feet are mostly numb and you can't tell what you're stepping on or where you're stepping?  Maybe you'd like to deal with the guilt that you can't carry your 2 year old everywhere? Maybe you'd like to feel the terror of not knowing for sure if you could catch your child if he chose to run away from you? Maybe you'd like to be judged for anything and everything because you just wanted to get out of the house with your child, no matter how much it takes out of you to do so?

But people who give The Look don't care. That's all I can assume. They don't care who I am or why I do things the way I do. And I can only assume that my life, hard as it can be, must be much more fulfilling than theirs. Because I never have the time or the energy to judge someone else so harshly.