Mothering with a Chronic Illness

I have Multiple Sclerosis - that's obviously not a big secret. But there are so many other types of chronic illness - Lupus, Fibromyalgia, Lyme Disease, Hashimotos, Crohns - and the list goes on. Many different forms of sickness, but all debilitating, just the same. Sure, we all have our "not so bad" days, when we get a glimpse of the person we used to be - before a diagnosis on a medical chart sent our world reeling. But many of us have days that are challenging - days when our faith and our hope are pushed to their limits and we struggle. Days when it's hard to just get out of bed, much less face the day and all of its responsibilities. Days when just taking a shower wears us out, when the pain shoots through our bodies and threatens to send us to the floor. Days when we're too sick to eat, but the weakness of not eating makes us hurt even worse. 

Now, add to that the stress of parenting, and the guilt that often comes along with it. 

One thing that has been so hard for me to deal with is the fact that I can't physically do the things I want to do with my kids anymore. Sure - some days I feel good and I can walk them to the playground that's across the street from our house. There may be a day when I can make cookies with Lily or draw with them. But I can't be the mom I WANT to be for them - I can't spend more than an hour with them anywhere before my batteries run out and I have to go home. I can't run around with them outside or spend all day going and doing fun things with them, because I need breaks. Lots of breaks. It's not just my legs, either. If absolutely necessary, I can use the wheelchair for things like the zoo or park, or just sightseeing downtown. The real "kicker" is the energy it takes for me to mentally focus and engage - and the drain of trying to ignore the physical pain for any length of time. It's just too much. 

They tell you that, with MS, you have to be wise in how you use, and conserve, your energy. Living with a chronic illness is extremely draining on your body, and you need to save that energy for the things that are truly the most important. Being exhausted constantly because you're pushing too hard is a recipe for disaster, especially with MS. It can cause symptoms to flare, it can put you into a relapse, it can cause you to get sick with whatever funk is in the air that day. You have to be kind to your body and give it the rest it needs. 

But this is so hard when you have small children who NEED you. I'm blessed - I have a wonderful husband who does so much with them already. When I'm not feeling great, he takes over and does everything - giving baths, brushing teeth, reading stories, playing games - you name it. He's pretty great. Despite all of that, though - I still feel badly that I can't be as active as I want to be for them. I can't tell you how many times I've had to say "Mommy can't right now, buddy...she doesn't feel well." To see their faces fall when I say that - it's fucking heartbreaking. There was one instance when one of them actually told me, when I promised we'd go do a certain thing, "But we WON'T because your face will hurt..." UGH. Ya'll, it's so very hard. 

Add to that the fact that I'm still working full time. Thankfully, I'm in an office setting, so I don't have to stand or walk all day, and I'm not required to do manual labor. But it's still a mental and physical drain at times, despite the fact I LOVE my job, my coworkers, and this amazing company that I was blessed with when I first moved to Texas. God placed me here for a reason, and they have been so accommodating as I navigate all the MS symptoms and the doctor's appointments and procedures. I am thankful, and I see myself working here for years to come.

But it all builds sometimes, and by the time I get home in the evenings, I am beat. It's hard to have to tell your son "I can't pick you up tonight, buddy; Momma's too weak." Or to tell your daughter, "I really can't go outside tonight, baby. My legs are done." Thankfully, Eli's good with snuggling up next to me as I rest in our bed, or on the couch as we watch Gilligan's Island. Lily is pretty creative, too. She'll bring cards to me and we'll play "Go Fish" as I sit and rest. The two of them love to "do Mommy's hair" which usually turns into a ridiculous fiasco consisting of water bottles and glittery barrettes and hair spray and tiny ponytail holders, during which I usually get accidentally smacked in the head with a hairbrush at least once. 

Kids are flexible, and I know that. I know that the two of ours will know that they are loved. They will know that Corey and I are their biggest fans, and that we believe in who they are and in their potential for greatness. They will know that Mommy didn't just quit when things got tough. She fought to keep life going, even when it sucked, even when it hurt like hell - she woke up every day and DID LIFE. 

If you're a mom with chronic illness, please try to give yourself a break today. Trust me, I know it's hard. We feel limited in what we can give our littles (or bigs), but our love hasn't been limited at all. And, in all reality, that's what they want from us the most.