How Being Sick Has Changed the Way I'm Able to Parent

Out of all of the challenges that my ankylosing spondylitis (AS) has thrown many things at me, the hardest has been the constant feeling that I am a failure as a parent.

The back pain from my AS started to affect me really badly when my youngest child was 4. The limitations this placed on me as a mother broke my heart constantly. I couldn’t pick them up, push them on swings or bend down to tuck them into bed. They would ask me to turn around and look at things in the back of the car and I couldn’t turn to face them. Not being able to do even these small, simple things for my kids was gut-wrenching.

Due to financial reasons, I needed to work full-time throughout my kids’ younger years. This took away so much valuable time. Full-time working parents have it hard enough, throw a chronic illness into the mix and it feels nearly impossible.

Work took every scrap of energy and resolve that I had. By the time I got home, I was generally so sore and tired, I would go straight to bed. Trying to get everyone up and ready in the morning with the stiffness from the AS burning my joints and nausea and diarrhea sending me back and forth to the bathroom made mornings really stressful. This meant I’d barely get any quality time with them during the week.

I would try to compensate on the weekends by taking them to do as much as I could handle, but I would often have housework that needed catching up on, so we would generally opt for watching movies together and gaming instead. We would eat junk food and hang out in the lounge. Not the mother I envisioned that I would be at all.

As the kids got older, I got sicker. Now, any parent of teens will know that kids get more expensive as they get older. As my expenses grew, my ability to hold a job declined until I was unable to hold a job at all. Then a whole new set of guilt started, the guilt of not being able to provide the type of life for them that I would like to.

So here I am, drowning in guilt because I feel that I am unable to give my kids the physical, emotional and financial support that I want to give them.

Still, I have to find the positives — and in this case, it would be the fact that my kids are growing up to be awesome people. They have maturity beyond their years, they are self-motivated, resourceful and they know how to make the most of a bad situation. I’m proud that the lives they have lived are molding them into the wonderful adults I am watching them become.

Life in a chronically ill family might not be perfect, but it is beautiful in its own way. There are many tears and tests, but there is also so much love. It doesn’t matter if you can’t get out of bed, you are still “mom” or “dad.” You are the one who always holds them in your heart, loving them unconditionally, even if it is only from the sidelines. They feel this, they know this and that makes you their hero.

So remember, if you are a chronically ill parent, please don’t beat yourself up. The most important thing you can give a child is your love and your illnesses can’t stop you from giving them that!