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When Chronic Illness Makes Me Question Myself as a Parent

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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, and 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 being cured, but certainly by being able to manage 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 hadn’t done and the things I would never be able to do.

I know I brought this pattern of thinking on myself, and I know that concentrating on the negatives in life isn’t good, but I still had these thoughts because I didn’t know how to stop them at the time. Yet here’s the surprising part: it turns out this derailment of thought was necessary. In the end, it changed my whole outlook on life.

We all question ourselves at some point in our lives. I have active 20- and 22-year-old sons. I have been sick their entire lives. There is so much I wish I had done with them. So much I wonder about. I constantly ask if things would be different if I 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. Instead, I couldn’t keep up when they wanted to learn to play an instrument, and I fell asleep after work when I forgot they had joined Scouts. I just wasn’t “that” mom.

Would things have been different if I wasn’t working while raising kids, so I could have given all of my energy to them? Would they have learned more from a mom who had a different career? Or gained more from a mom who wasn’t looked upon as a liability because of her illness and bounced from job to job as it became too much for employers to handle? If only 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 my boys be different if I had been able to keep a cleaner house and cook more homemade meals? If I could have baked cookies weekly (I do 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 nonetheless.) I wanted to be the cool mom on the block whose kids could invite friends over after school without worrying that dishes would be overflowing in the sink or that snacks would be sparse. I did not want to be the person sitting on the couch in pajamas because standing in the shower hurt too much that day. But that’s who I was.

Yes, that’s who I was. And this is who I am:

I am the mom of two young adults who genuinely care about their friends and family. I am someone who raised two amazing young men who both 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 traumatic brain injuries. I am someone who survived being hit by a drunk driver, being attacked at my job, having a near-fatal blood reaction, going through natural childbirth and having four surgeries and two fractured backs. I am someone who has been through stitches, IVs and ER visits and held my children through the same. I am someone who has traveled to Europe and flown a WWII warplane. I am someone who has traveled by train, plane, boat and bus and seen awesome things. I am someone with Sjögren’s syndrome, mixed connective tissue disease (MCTD), inflammatory arthritis and fibromyalgia. I am someone.

And that someone is living her own life, no (more) questions asked.

Originally published: July 8, 2016
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