Thursday, September 13, 2012

When Reality Steps In

I have no illusions about my life. I do not lie to myself or to others about my capabilities. I do not make excuses and I make every effort to live my life to the fullest, while still keeping my limitations in mind. I have always said that I do my best and I do things differently. And that is fine.

When I became a mother I swore that I would find a way to be the best parent I could be. I swore that my disabilities would have as little impact on my child(ren) as possible. I swore that I would find a way to do everything I needed to do.

And until today, I have done that. Until today I truly believed that I could protect and shield my child(ren) from the reality of my illness while they were small. Until today I truly believed that if I just tried hard enough and pushed enough and if I just put my mind to it I could figure out a way to do everything I needed to for them.

Until today there had never been a situation that I couldn't handle. Until today I had never had to ask someone else for help with my child. Until today I had never had to face the fact that I physically was unable to help or to protect my child. Until today I didn't know what it meant to feel utterly helpless and hopeless.

We went to an indoor play space today called Jumpin' Jax. It is filled with a variety of bounce houses. My son had a good time, he was enjoying himself and playing. I would watch from the side, and everything was fine.

Until he followed some kids in to the biggest structure. He apparently reached a point where he couldn't proceed. He was unable to climb up the wall he needed to to go forward, and he couldn't go up the slide to go backwards. So he began to scream for me. He began to cry. He was frantic.

I tried to go inside to help him. I told him I was coming. And when I was suddenly faced with the fact that I was disabled and pregnant, that I could barely walk inside the structure, let alone climb to where he was, I became frantic.

I tried. I pushed. I willed my body to JUST WORK, to just let me get over this stupid 4 foot tall wall and get to my child. I begged myself to just find a way, to just make it happen. But I could not. I couldn't get up. I couldn't move. I was listening to my frantic child screaming for me, begging me to come get him, to help him - and there was nothing I could do. I had to leave him there, screaming, while I used all of my energy to get out of the structure and try to keep myself together while I asked an employee for help.

They helped him. The employee quickly and easily scaled the wall that defeated me. She rescued my child, who was still screaming and crying, who ran red faced, sweaty, with tear trails down him face to me. He clung to me, sobbing. I don't know how I found the strength to carry him to a chair. But I did, and then I collapsed, holding him, both of us crying.

I've dealt with disappointment before. But I have never had to feel like I completely and utterly failed my child. I couldn't help him. I physically was incapable of getting to him, I was unable to be the person who saved him.

It's not like when he's sick and I can't cure it - because this is purely a failing of my body. Another mom could have helped her child. Another adult DID help my child. The employee had no special training, she did not prescribe a pill or a test... she simply had a working body.

And I don't.

I worry that my child will feel that he can't trust me. I know this is unfounded. I know that it was ME he wanted to cling to when he was out. It was ME that he wanted for protection. It was ME who he cuddled and held on to. I know, logically, that he is undamaged and that this is one of many times that I will have to ask for help.

I know that I did the right thing. I know that being able to recognize my limitations and to not feel any shame about asking someone to help me is a good thing. I know that. But I simply cannot put in to words how much it hurts me to face the fact that I can't protect him.

I have never felt so utterly broken and defeated as I do right now. I have never felt unsure of my ability to be a parent. But I felt it today.

Now I am left with trying to figure out how I reconcile these feelings and this experience with trying to keep our lives full and interesting. How do I prevent this from tuning me in to a recluse? How do I go in to new situations without this fear hanging over me?

I just want to be the best parent I can be. And now I fully realize that being the best I can be does not mean being able to do everything... but it does mean that I need to try and better assess a situation before it's become a crisis. It means that I need to know my limits better. It means that I have to realize that it's better to ask for help sooner than later.

My son is fine. When I was crying while writing this he said "Momma, don't be upset. Momma no be sad. I love you." And I know that he's ok. I know that he doesn't hold it against me.

Now all I need to do is figure out how to not hold it against myself.

Tuesday, August 21, 2012

How Much Impact Does MS Have On Your Life?

This started as a facebook post, but I felt the need to expand on it, and felt it was important to talk about here. 

I did two surveys today that related to MS. I've been trying to get more "active" in Volunteering for things to "help" with MS, I am a Peer Support Volunteer and I have been doing some surveys and other things online for research purposes. And today just sort of overwhelmed me. 

I hate being asked how much MS "interferes with my daily life." It's an impossible question. For one thing? I don't really remember/think about life before MS, because there is no freaking point. MS is a constant part of every single thing I do in every single aspect of my life. I can't get rid of it, I can't change it... But I also can't focus on it and try to quantify its impact. I still do what I really want to, even if I know it's going to be hard or even if I know I'm going to pay for it later. So how do you qualify that?

How, exactly, do they intend this question to be answered? It's not even an essay question, it's a freaking 10 point scale. Is a 1 something like "The doctor said I had MS, but I have zero issues and usually forget"? Is a 10 something like "I am confined to my bed and cannot even feed myself"? What is the scale? What are they looking for? It's blatantly obvious that this survey was not written by someone with MS and was, in fact, not intended to be answered by someone with MS. Because really? How are you supposed to answer a question that is so ambiguous and so upsetting?

I know that taking my kid to the park or the beach or hell to the store is going to have consequences. But that doesn't stop me. I know that staying up late to try and spend some time with my husband is going to have consequences. But that doesn't stop me. I know that everything I do, other than lay in bed with the fan and air conditioner blasting is going to have consequences. But that doesn't mean that's where I spend all my time.

So where does that fall? Where does "It impacts what I do on days when the temperature is above 70*, but I don't let it fully dictate my life because I am a stubborn bitch" fall? What number is that? What number is "I have to plan my day in order of what is most important to accomplish, because I don't want to unexpectedly run out of energy when I know I have the whole day left"? Can someone please explain this to me?

MS sucks. And? I don't know how to quantify it or qualify it or explain it. It is what it is, and my life is how it is. If I were to focus on my limitations or the things I couldn't do I'd have no kind of life at all. So instead I don't think about it. I do what I do and I push myself until I can't push anymore. Where is that on your scale? And where's the "I push even when I can't push, until I'm able to collapse in to bed and can't even cry about it?"

Because this is my LIFE. This isn't hypothetical. It's not a matter of eating better or trying harder or being stronger. It's a matter of what makes life worth living. And making life worth living means ignoring so many things and just trying to do the absolute best I can for my family. Dealing with pain is easy. Pain can't kill you. But not being a good mom? That would kill me.

There is no scale for this. This is not a yes or no question. My very essence cannot be quantified for your drug study or your study about the impact of MS on the emotional lives of those who live with it. Because I'm not going to sit here and put on a brave face about it, but I'm also not going to sit here and cry and beg for a miracle. 

You want to know how MS impacts my daily life? I wake up in the morning and I have to get out of bed slowly. Sitting up too fast is hard both while pregnant and while having MS. I need to take my time or I am liable to lose my balance or my hips will give out. I usually have to pee, and walking to the bathroom is hard because I have a weak bladder, both from pregnancy and from MS. I lurch and hold on to the wall, I force a smile for my 2.5 year old son while he greets me, then I finally get in to the bathroom. Where I wait. Because as weak as my bladder is and as badly as I have to pee, I also have a hesitant bladder because of MS, and it can take me up to 15 minutes to urinate. I have considered self-catheterization as an answer, but I haven't been able to take the final step and actually ask for a referral to a urologist about it yet. I am only 29 freaking years old. And it's traumatizing that I can't fucking pee. Once I finally pee, I put on my clothes and to out to the living room.

I've only been awake 20-30 minutes, but I need to rest. I sit and listen to my son while my husband begins getting ready for work. My son usually wants some more food (he's usually been up for over an hour by the time I get up) but I delay him while I recuperate from my bathroom troubles. 

Ok, we fast forward, my husband leaves for work, I get my son some food and start with my chores. I need to do the dishes, and I have to do them first thing, because they need to be done. Loading the dishwasher takes me 30 minutes. Because it's hard to bend down, because I have to take breaks, because I know better than to rush. 

Then it's time to figure out what my son and I are going to do. What's the weather like? How much pain am I in? How much are my muscles spasming? Did I sleep ok? What kind of mood is my son in? Does it seem like he's going to be cooperative or is he not feeling well and likely to be a challenge? What time is it? All of this has to be considered, because my life is a very delicate balancing act. Too much activity, too much stress, too much heat, too much anything and it could all come crashing down around me. And no matter WHAT happens, I have to be able to take care of my son. 

Ok, so, let's jsut assume that the weather seemed nice, that I was having an average pain day, an average muscle spasm day, I got decent sleep, the pregnancy symptoms aren't too bad, my son is in a good mood, it's before 11 am so we have time before lunch... So, ok, we go to the park. The park is about 2 blocks from our house. But I still drive, because I cannot walk that far. The downside of the park is that there is no shade, but it does have benches I can sit on and see my son while he plays. 

So, we go to the park. I sit on the bench. But of course my son wants me to come watch him. So I do, because I'm his mom first, and a person with MS second. The walking and the heat makes the pregnancy symptoms worse, and the baby starts kicking around a ton. Whatever, I push it aside and smile and play with my son. I watch the clock. I know that I have to be careful how long we are here. I can't let myself get too worn out, we've got a full day left ahead of us. 

An hour, MAYBE 2 if I actually get to sit on the bench, and we've got to go. I have to bribe my son with movies, maybe even with grabbing lunch in order to have his cooperation. But I need his cooperation. At this point, he is stronger and faster than me, if he fights me, I know it will take a ton of energy to overcome his resistance. So bribery it is. 

Getting out of the van at home is HARD. My hips are locking up, the muscle spasms in my thighs and back are intensifying, I am so stiff and in so much pain I can hardly walk. If I can just get us in to the house and sit in front of the fan with the ac blasting, I can make it. I have to make it. I grunt and struggle, but I do it. My son asks "Momma, you hurting?" I answer that yes, momma's hurting, but she'll be ok. It's sad that my toddler has to deal with these realities, but he does. I get our lunch. I cross my fingers that I can eat. Lunch is always simple. Left overs or sandwiches, maybe I picked up food, maybe I nuke something. Whatever, it's fast and it's easy and that's the way it has to be. 

I zone out while we eat and watch one of his movies. Then he tells me he's ready for a nap. I know this is going to suck. To spare him seeing how much I hurt, I send him to the potty while I struggle off the couch. We hobble to his room, I sit on his bed and put his diaper on (we're fully daytime potty trained, but he still struggles with naps and bed time. No worries from me.) Then I close the door and sit down in front of the fan. 

Can I do some work of my own and ear a little money? Or do I need to go lay down? It all depends really. I have to weigh how much good a nap will do versus how good I will feel to be contributing to our income. Work usually wins. I have my pride, and I want to help support our family. 

I usually still go and lay down for awhile after. Being in bed with the ac on and the fan on and the dark feels like heaven. It's the only place that the pain is minor. It feels so good to lay down. I think all I want for vacation is to lay down in that room and not have to leave. Not have to get up to use the bathroom, not have to eat, not have to do anything.

Also by this point I have used the bathroom at least 4 times. I am in my third trimester of pregnancy, after all. It's exhausting. 

My son comes to get me when he wakes up. I try to bribe him to stay in my bed so I can continue laying down. He usually doesn't go for it. I have to fight back tears while I get out of bed and go to the bathroom again. I get him a snack. I check the time. I realize I've got 4 hours left until my husband comes home. I fight back tears again.

I cave. It's movie time. I let my son pick a movie (he doesn't finish a whole movie with lunch.) I aim the fan at myself. I get a Mountain Dew so I can stay awake. I either nap on the couch (hard to do, makes my legs lock up, but still...) or I read a book on my tablet. I admit defeat at the rest of the day is spent basically letting my son do what he wants and me getting him healthy snacks or changing the movie, or watching him play with his cars. I take a backseat and let him just do his thing, because if I don't I'm going to be unable to do anything else. 

Resting for a few hours like this makes me feel a bit better, so I can interact with my husband when he comes home. Then it's time to wrangle our son in to bed and maybe try to manage some alone time together.

Then I'm back in the bedroom around 11:30, where it's dark and cool and I can lay down in the paradise of my bed. 

So, tell me, what number is that? 

Because I don't know. MS impacts every single moment of every single day. Every move I make, every decision I make, every last detail of my life. 

I am not bitter. I am not angry. I gave up on those negative emotions long ago, because they only took more precious energy from me, energy which I desperately need for other things. 

I find small joys, now. On Monday we saw a bulldozer at the park, parked in the parking lot. I asked if my son could get a picture next to it, instead the man working with it took my son in to the cab and let him sit in the driver's seat. My son was in heaven. It made me so happy, and remembering that and hearing him talk about it made the pain a little easier to manage. 

I love to cuddle with my boy in the afternoons. He laughs with the baby kicks him through my belly. I can't wait to see him cuddle with his new sibling. He talks about the baby coming out all the time, he says he will help me take care of the baby, he says he will be a good big brother. And I smile. Because I know he will.

So what's the breakdown? What number should I pick on the scale? Because I don't know. Because I don't have the time nor the energy to contemplate how much MS has taken from me, or how much it makes decisions for me. I am too busy trying to be a wife and a mother. I am too busy trying to be supportive of my friends. I am too busy LIVING MY LIFE. 

I have a life. It may not be exciting to anyone else, it may look dull and sad and boring... but it is MINE. And I love my life. I love being a mom, being a wife, being a friend. I am not as active or as social or as impulsive as some other people... but I do my best and I try my hardest. 

So you can take your scale and your quantifying and your bullshit research about how badly MS has impacted me and you can shove it up your ass. I don't care. It's that simple. 

The impact MS has on my life doesn't matter to me, because I can't do anything about it. My job is to work around it, to compromise, to live and to be happy and to be the best wife and mom I can be. It doesn't matter what I could do if I didn't have MS. Because that is a fantasy that I don't have time for. I'm not going to sit here and mourn what I've lost instead of rejoicing in what I have. I don't have time for that. I don't have energy for that. I'd much rather spend a couple hours at the park listening to my son laugh than to sit at home and cry about what I could do with him if I was "normal." 

You figure out what that means on your precious scale.

Monday, June 11, 2012

Summer Time Blues

Summer has hit. Days of sunshine, heat, clear skies... Days of pain, exhaustion, fatigue, praying for the sun to go away.

Heat is the enemy for those with MS. It's not even a matter of whether or not I "like" the heat. It's a matter of "I cannot function in the heat." Once it gets above 70* my body starts shutting down. I cannot concentrate, I cannot move easily, my pain increases at lease 10 fold. My muscle spasms get worse, my mood plummets, my fatigue and exhaustion sky rocket. Simply being awake takes more energy than I have to spare.

I wish I could sleep the days away. But I have a 2.5 year old. I am pregnant. My son adores the summer. He wants to go outside every single day. He wants to run and jump and get dirty and tell his daddy all about it in the evening. He hugs me while we're outside and says "I'm happy mom." And I will not deny him that.

Because I am a mother first. When I made the choice to have children, I made the decision that I was going to put them first, always. I swore to myself that I would not let my disabilities impact them any more than they absolutely have to. And that means that I must learn to function in the summer, whether it's easy or not. It is possible. It has to be.

I no longer even try to look "put together" when we go out. Eff that noise. Cloth bermuda shorts are much easier than denim capris. I am 29 years old, married, pregnant, have a toddler, and I'm disabled... who the hell am I trying to impress? Seriously.

So we go. I limp along after my son. He runs with abandon. He is so excited to be out in the world, living life and having fun. And he drags me behind him. I find myself smiling in spite of my agony, because his happiness is contagious.

And I take pride in that. Above all else, I take pride in knowing that no matter how I will pay for it later, I give him those chances for pure happiness. I can swallow the pain. I can hide it until he's asleep. I can keep it to myself.

Because this is my pain. This is my disability. This is my decision. MS can make me its bitch for the rest of my life. But it will not have this hold on my children. I refuse to allow that. I will not bow. I will not compromise on this. Never.

But I hate the summer. Oh, how I hate the summer.

Monday, May 21, 2012

Being a "Disabled" Mom

What does it mean to be a disabled mom? It means not being able to run and jump and climb with your child. It means not being able to get down on the floor to play.  It means having to say "Momma doesn't go fast, honey." It means having to say "Momma can't climb the slide, but I'll watch you!" It means sitting or standing on the sidelines, watching other parents play with their child in ways you can't play with yours.

Being a disabled mom  means that I do things differently with my child. It means I have to get creative and find ways to work around my limitations so that I can still give my child everything they need. It means that I take a great amount of pride in what I do accomplish and the relationship I have with my child, because I had to work really hard to get here.

Being a disabled mom also means that my son has grown up with the expectation that if he is capable of something, he will do it. He carries his own dishes. He carries things for me when I ask him to. Not even 2 and a half, and he knows where to put all his laundry, where his shoes go, where momma's shoes go, he empties his own potty, he will run and grab my phone and bring it to me if I forget it. He is a very helpful child, and it makes my life so much easier.

Being a disabled mom DOESN'T mean I ignore my child. It doesn't mean I don't play with my child. And more than anything, it doesn't mean I take this for granted.

I hate telling my son I can't get on the floor with him. I hate it. But I know that I am teaching him valuable lessons, I am teaching my son about limits and about not always getting what he wants. I never just tell him "no." I say "Momma can't get on the floor. Can we play in the window?" We have a large bay window in our house, and it's the perfect height for him and for me to sit in a chair and play. We play cars and blocks in the window a lot.

Being a disabled mom means making choices. It means deciding what is worth pushing myself for. It means knowing that if I do x, y, and z I will be unable to do a, b, and c. Being a disabled mom means choosing to be a mom before anything else. It means consciously putting my child and their needs above my own. It means never taking for granted the ability to pick up my child. It means relishing every game and every time I get to carry him around.

I've been nearly paralyzed from the waist down. I've been in a wheelchair. I've been confined to bed. I've been unable to feed myself, let alone take care of anyone else.

I've been there. And I know I can go there again. So I focus on every single day I have to be Mommy. People are always saying "enjoy these moments, they are gone too soon." They don't know how true those words ring to me. I know this could all change tomorrow. I know.

Being a disabled mom means living and doing and being, no matter what. I focus on today. On right now. I focus on these moments. I don't think about tomorrow or next week or next year. Right now is what I have, and I want to be the best mom, right now, that I can be.

It also means I try not to live in the past. I try to forget whatever mistakes were made yesterday. Every day is new, for me and for my child. We had a rough day yesterday? Big deal. That was yesterday. I'm not going to judge today by that.

Being a disabled mom means being forced to slow down and appreciate all the small things.

When I was laying in a hospital bed in October, 2006... I had no idea what I could possible do with my life. I gave up, I stopped fighting.

I never give up now. I never stop fighting through the challenges or the bad days. Because every bad day I have now is worth more than the good days I had before I was disabled. It's cliche, but it's true.

I'm a disabled mom. And I choose to believe that I am a better mom because of it.

Friday, April 27, 2012


I am 15ish weeks pregnant with my second child. Pregnancy is remarkably hard on me, and I'm really not sure if it's just pregnancy in general or pregnancy + my MS. Regardless, things have been hard.

We are planning a homebirth with a midwife. There are many reasons for this, but most of it boils down to the fact that I do not trust doctors easily, and being in a doctor's office instantly puts me on the defensive and in "Fight" mode. I have a checkered history with the medical profession, and frankly I'd rather just avoid them unless it is necessary. And I don't feel that pregnancy is a "necessary" time. My great-grandmother gave birth to 12 children in her home, 2 sets of twins. She also was a midwife to other women. No one is ever going to convince me that my body is incapable of handling pregnancy on its own.

That was a tangent. Anyway. My midwife has never assisted a woman with MS. Because fo this she wanted to know more about my condition and how my disease affected me. Mostly, she cares about me as a person and just wanted to understand my personal situation. I have no problem talking about my MS to anyone.

But as part of this she asked me to write out how my MS impacts me, how it limits me, how I am different from a person without MS.

And I had to ask my husband for help. Because I don't think about it like that. I know I am different, I know I have limits; but the fact is that I cannot allow myself to get bogged down in that.

There are different ways of dealing with MS. One of the ways I have seen done is to keep basically an MS "diary" of every symptom and its severity throughout your day. The thought of this is so alien and uncomfortable to me that I have never done such a thing. On one hand, it does create some difficulty when I realize a symptom has gotten worse, and I don't know when that happened. On the other hand, it allows me to live my life on my terms without constantly thinking of myself as "disabled" or "different."

I deal with my MS the same way that I deal with any other problem in my life - I give it only as much attention as is required, and mostly I try to work around it and live my life regardless of it. Kind of like I hate the fact that we have a shared driveway, but I just ignore it and try to make sure that I am careful going in and out of it, then don't think about it when I'm not pulling in to or out of the driveway. Does that make sense?

I don't think about my ability to walk unless we are discussing doing something that will require a lot of walking. Then I consider the terrain, what I'd need to carry, how long we will be out, whether I will be able to take breaks... If my son and I are just spending the day hanging out at home, I don't think about my ability to walk. It doesn't apply, so it isn't on my mind.

My defense against my disease is to live my life in spite of it.  I try to do what I want to do, I try to be the person I want to be, I try to just focus on the here and now. I don't think about the "before." Because it doesn't matter. What I used to be able to do is irrelevant to my life NOW. And I care about my life NOW.

Looking at the list my husband helped me make for my midwife is depressing. I want to tear it up and scream "That's Not Me!" but it is me. It's me, on paper; leaving my heart, my determination, my drive, my will out of it.

That's my problem with doctors. They only see the symptoms. They never think about the person behind them.

I am not my disease. And the only reason I am willing to show the list to my midwife is that I trust she will not see it as ME. She knows how driven and strong and capable I am. That is why she is assisting me in attempting an HBAC (homebirth after Cesarean.) She knows how hard I fought to have my first child at home. She herself said "You never gave up and you did everything right during labor. If sheer force of will would have gotten him out, you'd have done it." Because I do not give up. I do not stop. I do not back down.

I am not that list of symptoms. I am far more than that. It depresses me to look at the list, but not because of how it impacts my life. No, it depresses me because I realize that that list is how most people would see me. If I showed that list to people, how many would look past it to see who I really am? And how many would just focus on my various disabilities and decide it was too much effort to do anything with me?

That's the beauty of my life, though. Everyone in my life, all the people I love and the friends I have made; they don't see that list. And I know that. I know that they see me first as the person I am. And then it is understood that accommodations may have to be made.

That is how I live my life. I think of the end goal first. And then I figure out what I need to do to make sure I get there. Sure, I have to think of what I need to do to make it possible. But I never start with the premise that it isn't possible.

Wednesday, March 28, 2012


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.

Friday, March 16, 2012

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.

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.

Thursday, January 19, 2012

"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.

Sunday, January 15, 2012

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.

Thursday, January 12, 2012

The Start

I became disabled in September/October of 2006. Before I went to the hospital at the end of September, I was a relatively care-free 23 year old woman. I wasn't thinking about my future, I had just gotten a job I could be good at, I hadn't considered that my life would be turned upside-down.

Funny how things change.

I fell out of bed one morning. And over the course of the next week I lost the ability to walk unassisted. 10 days after that and I was released from the hospital with a wheelchair and a diagnosis of Multiple Sclerosis. My life, as I knew it, was over.

I hid in my parents' house for a year. I didn't know who I was or what I could possibly do with my life. And then, in December of 2007 my grandfather died. My desire to comfort my grandma and my desire to make the most of my life finally propelled me in to action.

I moved out of my parents' house in March of 2008. I moved to a new city with a friend. I met an amazing man in May, a man who saw past my wheelchair and put a lot of effort in to having a relationship with me despite the challenges my disabilities presented. I married him 5 months later in October of 2008.

In January of 2009 I was hospitalized for an MS flare. I completely lost the use of my legs and one of my arms. My new husband stayed at the hospital with me and we spent hours talking about what the future held for us.

So. There we were, I was being told by my doctors that I'd never walk again, that I needed to take a all these medications and I needed to do x, y, and z. Instead my husband and I decided that we should have a baby. And then all the looks started. The hushed tones. The sideways glances. The "How are you possibly going to care for a baby?"

Our answer was simple. "The same way we do everything else - however it works."

I got pregnant in April of 2009. Strangely enough I started walking short distances in the same month. I gave birth to a wonderful baby boy in December of 2009.

And here we are now.

I don't parent like other people. I can't do all of the same things other parents can. I am unable to do many things that other people take for granted.

But my son is 2 years old and his doctor says he is well ahead of the developmental milestones. He is talkative, extremely active, very sweet and polite. He is an expert at independent play, at helping mommy do things, at announcing his needs. My son is very in charge of our day. I don't play on the floor with him, but I sit and we play on the couch or I pull a chair up to a table and we play there. He plays on the floor while I watch. He picks things up that I drop. He carries his own plate to the table. He brings me his dirty dishes. He asks to go out and play and then directs me to sit in my chair. He yells "Mom! Here!" when he wants my attention. And I look, I cheer, I take pictures of him and praise him.

I am not a helicopter parent. Both because I simply cannot be one and because I would rather my child figure things out for himself. But when he falls, I am always poised to get up and rush to him. I say "Are you ok?" And he tells me. Sometimes he walks to me and asks for a kiss where he is hurt. Or he screams for me and I care for him like any mother cares for her injured child.

Our life is very different. But it is also very much like every parent and child relationship. My husband has been extremely involved, when he is not working to support us. He takes night duty, he takes our son our for adventures every weekend so I can relax. He massages me and cares for me in the evenings after our son goes to bed.

And I am fortunate to have such an attentive partner. I am fortunate to have a child with the personality he has.

And in many ways, I am fortunate that my disability gave me a whole new outlook on life and allowed me to find what truly matters to me.

The trials and tribulations of living as a disabled person and the challenges of being a mom are great. I don't know any other people in my position. But I am fine with that. I am confident in my choices and in my place. I don't care if I am one of the many or one of a few.

I am a disabled mom (sort of) walking. This is my path, my adventure, my life.