Disability and Motherhood

Hello!  As you may already know, I am a mom and I have disabilities.  I love my children more than anything in the world, and have dreamed about being a mom for as long as I can remember.  I did not, however, dream about being sick and in pain from the moment I woke up to the moment I went to bed.

How can I take care of my girls if I have all of my illnesses?  I have to be honest with you.  There are many days where I cry in bed before starting the day, as I am in so much physical pain.  I wonder how I am going to get through the morning, never mind a whole day.  My girls and my husband are my inspiration.  Just thinking about seeing their faces, receiving their hugs and kisses… that is what gets me out of bed every morning .

I have many of what I call “oh poor me” moments.  When I start to feel as if I am the only one who suffers from these horrible diseases they call Lupus, Fibromyalgia, Kidney Disease and Narcolepsy, I turn to my fellow sufferers.  Having a support system of others going through the same thing that I am going through is so incredibly helpful.  I can tell them how I truly feel without feeling as if I am going to be thought of as a chronic complainer.

With laundry to do, dishes to be done, and food to be made, I spend much of the day feeling overwhelmed.  I feel as if I have the beginning of the flu every day, and to do housework on top of it… well, sometimes it just plain sucks!

I cannot go outside very often.  The sun causes major rashes on my arms, chest and cheeks.  When I go outside with the girls we make sure that there is a shady area so that I may sit.  We make a lot of projects, watch a lot of movies, and have a lot of fun simply because we are together.

I sometimes wish what the girls are going to think of me as they get older.  I hope that they are not embarrassed by how I look if I lose my hair again and have to wear a wig.  I hope that they don’t pretend not to know me out in public because I am covered in rashes.  I hope that my girls are not teased because of me and how I look.

The world does not stop for people with disabilities.  You cannot pause motherhood simply because you are having a bad day.  I have learned to adjust my life accordingly and make sure that I save my “spoons” for my children.  No matter how sick I am, I love my children and would do anything for them.  Not even being sick can stop me.