Healing Heart

It was late October when I got a call from a fellow activist. Now I have a rule that when someone from our diverse disability community asks for help, I try to accommodate where possible. This lady was ringing me because she was due to give a talk on disabled parenting the next day, but she had other commitments she’d forgotten about. Luckily, I had none scheduled. She was to give a talk to medical students in UCD.

“I’ve nothing prepared,” I said in a panic.

“You’ll be fine,” she replied. “Just wing it, be grand.”

And so against my better judgement, with no notes with me whatsoever, I found myself on the train to Dublin the next morning. I love the train; often it’s the only solitude I get when I spend most of every other day studying, writing or parenting. However, this time I could hear my own thoughts, and I didn’t like them. How come, almost seven years later, I still felt like I’d dodged a bullet, that I’d got away with doing something terrible? Why, after all this time, and all the happy memories I’d made, was there still that little sting, that tinge of unfairness lingering in the bottom of my soul?

Why do I still feel hard done by, robbed of what should have been such a happy time for my husband and I, the memories of bringing Alison home for the first time drenched in panic and fear? And is it, in fact, a bad idea to rake over the painful details of that time over and over again?

I arrived at UCD and after several phone calls, figured out where I needed to be (UCD is huge). I was met by the lecturer, Mary, who was absolutely lovely and very welcoming. We were both nervous because we didn’t know anything about each other.

“So,” she said, after the introductions, “how was your experience of maternity services?”

“Well,” I replied, in a matter of fact tone, “the physical care I received was excellent, but the attitudes of some of the staff were… horrendous!”

“Oh, brilliant!” she exclaimed, clasping her hands in delight. “Well, not for you, obviously, I’ve no doubt, but this is the type of discussion we need to be having with our future midwives and healthcare professionals. I want you to be frank and brutal as possible. Lay it all out there, all the gory details!” I smiled with pursed lips, hoping I wouldn’t shatter like a china vase. Of course I know that in this disability game, you need to have a thick skin. Otherwise you won’t survive – simple as.

The students came in and Mary introduced me, before disappearing to my horror (I hadn’t realised that I was considered to be a guest lecturer). To put the students at ease I told them there was nothing they couldn’t ask me and that I would be honest in my answers. Telling them that I was told that I was a danger to my own baby hurt in all the usual places, but we did have a bit of craic when I told them I knew better than the Public Health Nurse about Alison’s reflux. They seemed absolutely horrified to hear that she visited us for six months solid, on a daily basis.

“Any advice for us future midwives?” came one of the questions.

“Listen to us,” I said. “You’re going to be coming out of this university with six years’ of study behind you, but at the end of the day disabled mothers are – and always will be- the experts. Very few disabled mothers decide to have a baby willy-nilly. This is a decision that we agonise over, and sadly a decision that many potential mothers don’t have the mental energy or the fight to follow through with. Don’t treat us like we’re stupid. Support us, don’t frighten us. Often we are frightened enough.”

When Mary came back in, she was surprised to see us all smiling and laughing, me most of all. I had managed to get ‘down with da kids’ and I could see that I had really got through to them. I was still in pain, but happy. I had changed minds, challenged perceptions through opening up old wounds. And those wounds were slowly healing again.

Alison turned seven on Saturday, so I have been a wobbly yummy mummy for seven whole years now. And although it’s had its challenges, I wouldn’t change it for anything. I missed her birthday as I was in college in Maynooth. On Sunday, we were asked for examples of self-advocacy, and so once again I went through how we advocated for the right to be parents. Our class was horrified, to my delight, because it confirmed to me that what we experienced was wrong.

I can’t change that experience. The comfort I can take from it, however, is that we proved everyone wrong. That we have a beautiful, intelligent daughter who made our lives purposeful and complete. Alison makes me want to be a better person every single day. She’s the one that reminds me why I speak out so much, why I hope one day that the world will be a better and more accepting place for disabled parents.

Recovering from the hurt in my heart will be a lifelong ordeal. But if I can help, encourage and educate others to make the lives of future disabled parents easier, it will be worthwhile. And hopefully, in helping others, my own soul might finally heal.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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