Life Happens, Lupus Awareness

How Do You Do It? 

I can’t imagine being the mother of a toddler and having Lupus. How do you do it? 

You know honestly… most days I ask myself the same question. The struggle between balancing motherhood and a chronic illness is real. Some days I wake up like a toddler after a cat nap in the car and other days I feel like I’ve got one foot in the dirt.

I guess it always surprises people that despite a chronic illness I don’t let it stop me (as much). Don’t get me wrong Lupus sucks. Things I once did with ease and took for granted– like not being exhausted after a shower, require a lot more energy. All of our outings are carefully planned to ensure I have enough energy to make it to the end of the day. And sadly some days my body says no and I have to hope my tiny human person won’t be too disappointed. Those days are the worse!

But chronic illness or not. I still have a life to live. I still have a daughter to raise. She didn’t ask for this anymore than I did, so why should I punish her because I don’t feel 100% everyday? Because if I did wait until I felt 100% we would never go anywhere or do anything.

So…If it means forgoing a day of rest to do something with her I’m going to do it. Mostly because we get stir crazy and cabin fever is a very serious condition when you live in the boonies! I more often than not regret it later when my body is crying out in agony but the time and memories I have with her are worth it.

And I didn’t realize how much that mattered to me until I wasn’t able to do it for several months… over the holidays no less. The guilt I had was unreal. Even if she wouldn’t remember much I felt like I was depriving her of these moments.

So we make the most of all the good days. And even the bad days for that matter when we snuggle up together and just netflix and not chill because she’s still a highly energized toddler. But she’s at least aware of the days I need to take it easy and helps accordingly. And that is another reason I try to do as much as I can with her… she has adjusted unbelievably well to the circumstances for a nearly 3 year old. Unfortunately this will always be her “normal”– some days momma is really sick and other days she can grin and bare it. And I don’t want her to miss out on her childhood because of that… so like I said. I grin and bare it and endure whatever suffering my body has days later when it catches back up.

I guess that’s my secret. One day at a time. Making the most of the good days while preparing for the agony to follow. Because her happiness is worth all the pain in the world.


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