Parenting With AS

My children were in public school, and my daughter, who’s the eldest, was heading off for an exciting sixth grade graduation trip. She was so excited and looking forward to being with her classmates. I was happy for her, but it was hard to be feeling all the feels because I was getting ready for total hip replacement surgery as a result of my ankylosing spondylitis (AS). My daughter was counting down the days to her trip, and I was counting down the days to my surgery.

All I can say is the day of surgery couldn’t have come fast enough. I was in agony, depressed, and had become a former shell of myself. My days consisted of popping prescription pain pills and sitting zoned out in my chair with my brain in a hazy fog.

I couldn’t do the things I wanted to do with my kids — things I could do before the pain took my breath away. I missed taking them to the zoo to watch the lions frolicking with each other or reading them their favorite bedtime story.

It was no fun being housebound and shuffling around my home with a walker. I was down 30 pounds because I didn’t have much of an appetite. As my kids were running around playing and laughing, I was confined to the first floor of my house. I couldn’t even make it up the stairs to go to my bed and had become a prisoner trapped inside my mind and home.

No one was allowed to come near my left leg as the slightest touch caused unbearable pain in my hip (my hip was bone-on-bone). I protected my left leg at all costs.

I thank God I had a supportive husband who was a wonderful dad to our kids. It’s almost impossible to imagine what my life would have looked like if I was raising 2 kids on my own in that amount of pain.

I recall my mom doing all she could to take care of my younger sisters and me. She basically became the head of the household and raised us singlehandedly. My dad was in the picture, but I only saw him a couple of times a week. I believe I inherited much of my strength and resiliency from her, and boy, did I ever draw on those traits living in pain.

Advice for Parents

When I was in bad shape, I truly wished some things could have been different with my children. I would have sat my kids down and told them what was happening to my body so they could understand why I couldn’t play with them. I would have allowed them to come closer for more hugs. I was in tremendous pain, and when you’re in a lot of pain, as was my case, I was only thinking about pain 24/7. Nothing else. I can’t get those hugs back.

If you’re a mom or dad living in chronic pain, I totally get it. Everyone depends on you to do everything and you feel the responsibility in spades to keep everyone happy. Can I give you some advice?

Hug your kids like there’s no tomorrow. They want to be with you, pain or no pain. They need to feel your love and support, especially in their early years. Besides, as they grow older, discover new friends, and start dating, getting hugs is like trying to pull teeth from a donkey. Trust me on this.

Seek support. Raising kids when you’re at the top of your game (the time when you didn’t live in pain) is one thing, but doing so in chronic pain is no picnic. If you feel pressured and overwhelmed, get yourself into a group or ask a relative or friend if they can help you out. Don’t be a hero.

Communicate with your partner. Don’t sugarcoat the truth. Lay it all out. Share your disappointment, shame, and guilt about not being the way you imagined you would be with your family. When you have that heart to heart, you’ll feel such immense relief.

Here’s the thing: Pain doesn’t have to define you. It only does if you let it. You’ll be no good to anyone, especially your kids, if you don’t take care of yourself first. Take it each day at a time, each moment at a time if you need to. Do whatever it takes today so tomorrow can be better.

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