One of the hardest aspects of being disabled and chronically ill is not dealing with the conditions themselves, but trying to parent two young kids while also managing my EDS, Fibro, CRPS, POTS, OH, etc. As any parent knows, parenting itself is hard but add in disabilities and chronic illness of either a parent or child and it gets to be incredibly difficult. Now I’m not saying I don’t love my kids, because I do. They are my world, but some days I wish and long to be able to do everything with my kids that I see others do. Maybe it’s a case of the grass is always greener. I don’t know.
This longing for normalcy has reared its ugly head this morning in particular when I wake up in pain as usual but more than just pain, every fiber of my being is physically exhausted. Moving around takes extra time because I feel like I’ve run a marathon and I’m moving through a current of water. All I wish to do is curl up in bed and sleep the day away like I would before kids. Days like today my temper is short, my pain is high, and I’m generally not a very pleasant person to be around. Days like today are hard on my kids. They don’t understand that it’s not them I’m angry at, it’s that I can’t be THAT mom. That mom that has a hot breakfast of pancakes and bacon ready for them shortly after they wake up. That mom that has the whole day planned with outings and walks completely ignoring the fact that to go anywhere requires a half mile walk to the bus stop on days when my husband works. They don’t understand that I’m not intentionally ignoring their constant requests for food or drink or to play, but it takes longer to get the words in my head I want to say to my mouth and actually say it. They don’t understand that every single thing I do has to be so carefully planned out so I can make sure I have the energy to get back home.
So I fake it and rely on nap times to try and recover any amount of energy I can. I lounge on the couch and we watch movies or Netflix and read books and play catch. I heat up left overs and make it out to be to the coolest meal ever for lunch. I lighten up on discipline just enough to save myself those extra energy that I would normally have to exert dealing with the meltdowns that come with a special needs child and a 1 year old. I hide the tears of pain, frustration, and exhaustion to moments when they aren’t around and quickly wipe them away if they come near.
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The children’s book “Mommy Can’t Dance”.
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