We’re In This Together: Karen

This wasn’t how I thought it would be…

When I was fifteen years old, I woke up one morning with intense upper back pain.  Within half an hour, I’d lost feeling from the chest down. Thus began a whirlwind race to the hospital and a chaotic time of what felt like thousands of tests and procedures.  After many weeks, I was eventually diagnosed with a rare spinal cord injury caused by abnormal blood vessels close to my spinal cord called an arteriovenous malformation (AVM). Immediate surgery was required followed by 6 months of inpatient physical rehabilitation to learn how to live my life while sitting down.

Fast forward 15 years.  By age 30 I was happy, outgoing and determined.  I had lived in various cities from coast to coast, had travelled to far off places and had found a meaningful career as a social worker in a busy Emergency Department.  In 2004 I met and fell in love with a video game programmer from Alberta and by 2006 we were both ready to put down roots and think about starting a family together.

My friends could easily hop on a computer and find a wealth of information about fertility, pregnancy and what to expect when you’re expecting.  However, when I typed “Spinal Cord Injury” and “pregnancy” into Google Search I got minimal results and none that were considered helpful. I realized quickly that if this was the journey we wanted to take together, I was going to have to forge my own path.

We began with a visit to the Sexual Health Program at GF Strong Rehabilitation Centre in Vancouver.  This was followed by a referral for a pre-conception consultation with the Maternal Fetal Medicine clinic at BC Women’s Hospital, a program that specializes in providing care to women experiencing a complex or “high risk” pregnancy.   We were excited to be told that it was certainly possible to get pregnant and with the right care and support we could have a safe pregnancy and a healthy baby.

Fast forward two years.  After months and months of trying to conceive, I finally peed on a stick and the line appeared.  We were finally pregnant! The MFM team had been right. There were complications along the way but with expert care and skilled support, at 37.5 weeks gestation we welcomed our healthy baby boy into our world.

I desperately wanted to do everything right.  I wanted to prove the world wrong and show everyone that women with physical disabilities could be amazing moms.  I made sure they didn’t whisk my son away immediately after birth and held him skin to skin for as long as they would let me.  I placed him at my breast and was so pleased when he latched right away. I happily stared into these curious eyes and marvelled at his little fingers and toes.  I naively thought at this point that we had crossed the finish line and all would be rosy thereafter.

I was wrong.  We brought our little guy home and despite his strong latch and enthusiastic sucking, he didn’t seem to get any milk.  My nipples quickly became bruised, cracked and bleeding. I didn’t have sensation in my breasts so was frustrated every time the public health nurse asked, “Do your breasts feel full?” or “So, how does that latch feel? “  My frustration quickly grew into anxiety and fear. We have all heard the words repeatedly; breast is best. Here I was failing at a key aspect of motherhood.

So I continued to breastfeed and I pumped, drank the teas, hand expressed, read the books and the blogs. I did anything and everything to try to succeed at breastfeeding.  But, despite all my efforts, my sweet boy became increasingly fussy and eventually inconsolable. And to be honest, so did I. No matter how often I placed him at my breast, it wasn’t working.  He was losing weight. I felt like a failure. I became sleep deprived to the extreme. I was hesitant to go out in public as I didn’t want people to judge me when bottle feeding. I already felt judged as a mother who uses a wheelchair.  I was so scared to reach out for help. After all, I had wanted this baby. I had fought so hard and pushed down so many barriers to get to this point. How could I possibly admit that I wasn’t doing well? How could I tell anyone that I was sad, and scared and overwhelmed?  I couldn’t.

My husband worried about me but had no idea where to turn for help or guidance.  Our families lived far away and were unable to see the day-to-day struggles I was juggling.  I have a wide network of friends, many of whom are skilled counsellors or nurses, but I somehow managed to become very isolated during this time.  I loved my baby boy immensely but I wasn’t enjoying motherhood. This wasn’t how I thought it would be.

It was only when my son began to eat solids and move about in the world that I started to come out of the fog of postpartum depression and anxiety.  I saw that although he had been formula fed he was happy, healthy and learning new things every day. And once he hit age two, and his peers were also drinking out of sippy cups, there was no way for strangers to ever know that my boy had not been breastfed or that his mama had been so sad and scared during those early months.

I wish I could travel back in time to those early days of motherhood and tell myself that it is totally okay to feel brave, and scared, and strong, and broken all at the same time.   I’d tell myself to take the risk and be vulnerable and honest even with only one close friend or a peer support telephone volunteer to be able to find someone who could help hold the pieces together until I could mend the cracks in my confidence and reconstruct my idea of what being a good mama means.

I wish I had known then what I know now.   Being a good mother means so much more than breastfeeding.  It is love. It is joy. It is connectedness. To all the mamas reading this I want you to know you don’t have to do this alone. It is okay to ask for help; at any age or stage.   Someone will hear you. Someone will believe you. Someone will support you no matter what. <3


Karen Hodge


We will be posting stories on our blog. http://postpartum.org/news-events/

We’re In This Together is a photography series, coordinated in partnership with the Pacific Post Partum Support Society and the Good Mother Project, that offers messages of encouragement, hope, support and love to new parents.


For more information on how you can share your message, please visit: http://goodmotherproject.com/were-in-this-together