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.