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What It's Like to Be a Parent With Chronic PaIn

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I always had the idyllic dreams of adulthood: a career, a husband, a home and having children of my own. Little did I know, my life would be turned upside down by several rare illnesses that cause daily severe pain most people can’t even imagine.

emily and her son
Emily and her son.

I was lucky enough to accomplish some of these goals before my illnesses took hold, finishing a college degree and starting a successful professional career. After my third spinal surgery, a spinal fusion that ended in a rare condition called arachnoiditis, causing severe back and nerve pain, and affects functions like reflexes and temperature control, I was lucky enough to meet my husband. He fell in love with me even though I was using a walker and wearing a bulky back brace.

We talked a lot about having children. We both always knew this was something we had always wanted. But could we handle it? Could I handle it? Could my body handle it?

After much preparation meeting with high risk doctors, planning for help around the house and with the new baby we decided we were going to have a child. Our wish came true and almost four years ago we had a little boy. My pregnancy was wonderful. The hormones made the pain from my spinal cord injury and from Ehlers-Danlos syndrome almost non-existent. The relief from the pain was too good to be true. Almost immediately after giving birth, my pain started creeping back up. It honestly is much worse now than it was before I was pregnant.

I spent many days in a state of despair.

How am I going to care for this little person when most days I can barely care for myself?

But I have never been one to give up or give in, and decided I needed to suck it up and figure it out.

When he was an infant, I used pillows to get in a comfortable position to hold him, found the lightest stroller made, and regulated what pain medications were safe for breastfeeding. The lack of sleep didn’t help and many days my pain level was an eight out of 10. I thought infancy was hard, but then he became mobile, and of course heavier! I often have trouble keeping up with him, and we have ended up needing a lot of help by way of grandparents and daycare.

My pain gets worse because my conditions are degenerative, and as he grows, he becomes more active. Many times he will accidentally hurt me by a head butt that tweaks my neck, or a little elbow to my knee that just dislocated earlier that day. I try very hard to hide the tears, but sometimes he sees it. And he cries with me. When I had my cervical fusion surgery that required a neck brace, he was the first one to reprimand me “Mommy, you need to put your brace on!”

We are doing everything we can to give our son a life where he doesn’t have to worry about my pain. I never want him to feel like he needs to take care of me. I never want him to feel like he has hurt me. I want him to have a normal childhood without the restrictions of a mother in pain, and so he goes to soccer, he goes to play dates and we give him all of the love in the world.

When he looks at me each day with a sweet smile, gives me a kiss and says “I love you Mommy,” it is all so worth it.

Originally published: October 10, 2016
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