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.