Monday, April 25, 2016



When Chronic Illness Makes Me Question Myself as a Parent







   I just turned 50. That is such a huge number to look at. 50 years old. And I’m not handling it well. I know they say age is just a number or you are only as old as you feel, but the truth is, I am really upset by this. You see, I am sick. I have been for 20 years. But I always believed I would beat the disease. Not necessarily in the traditional sense, like a cure, but certainly by being able to contain it and live with it. And I mean live a normal life. But this year as my birthday approached in mid April, all I could think about were the things I didn’t do, and the things that I would never be able to do.
    I know this is something I did to myself and I know that concentrating on the negatives in life isn’t good, but it’s what happened and I didn’t know how to stop it at the time. But here’s the surprising part: turns out this derailment of thought was necessary. And in the end, it changed my whole outlook.
    We all question ourselves at some point in our lives. I have 20 and 22 yr old active sons. I have been sick their entire lives. There is so much I wish I had done with them. So much I wonder about. So much in their lives now that I think about. I constantly ask if it would be different had been healthy. If I had been able to take them to the park every day or had more energy to help them when they were doing school outings and projects. When they wanted to learn instruments and I couldn’t keep up or when they joined Scouts and I forgot and fell asleep after work. I wasn’t “that” mom.
    Would things have been different if I didn’t work while I raised them so that my energy was all for them. Or would they have learned more from a mom in a different career. One that hadn’t been looked upon as a liability and bounced around from job to job as my illness became too much for my employers to handle. If I had been able to ignore my pain and fatigue and push through the numerous infections my debilitated immune system allowed into my body. But I wasn’t that person either.
    Would they be different if I had been able to keep a cleaner house and cook more handmade meals. If I could have baked cookies weekly - and I love to bake - or been better at making them lunches every morning rather than depend on the school system. (A system I frequently forgot to pay as a side effect of my illness but a system that always fed my children none-the-less.) I wanted to be the cool mom on the block whose kids had friends over after school without worry that dishes would be overflowing the sink or snacks would be sparse. I did NOT want to be the embarrassment on the couch in PJ’s because standing in the shower hurt that day. But that’s who I was.


                                That’s who I WAS. And this is who I AM.


    I am the mom of two young adults who actually care about their friends and family. I am someone who raised two amazing young men who work 40 hours a week at physically demanding jobs and pay their own bills. I am someone who worked to better the lives of countless individuals with developmental disabilities and TBI without giving in to agency pressure to set aside the desires and beliefs of those individuals. I am someone who survived being hit by a drunk driver, being attacked at my job, a near fatal blood reaction, natural childbirth, 4 surgeries, and 2 fractured backs. I am someone who has been through stitches, IV’s, and ER visits, and have held my children through the same. I am someone who has travelled to Europe and flown a WWII warplane. I have travelled by train, plane, boat, and bus and seen awesome things. I am someone with Sjogren’s, MCTD, Inflammatory Arthritis, and Fibromyalgia. I am Someone...

And I am someone who is living my own life, no (more) questions asked.