The landscape of motherhood for me is rocky. There is inevitable anxiety as I must work hard to keep him safe – be vigilant for seizures, be careful that he doesn’t aspirate when eating, check that colds don’t spiral into chest infections that will land us in hospital, watch his positioning to protect his body from bending and twisting irrevocably. The smallest things like getting a coat on or putting him in a chair is usually a huge fight with his uncooperative little body. Balancing out the sadness that I will never hear him say he loves me, is the relief that he won’t throw a tantrum because he wanted the blue cup and he got the green one. It’s a crying shame he’ll never run and climb, but on the other hand I don’t have to put up with the hell that is soft play on a rainy day. The sound of Ted laughing in my arms as we run through the kitchen playing ‘What’s the time Mr Wolf?’ with his dad is something I appreciate a million times more than I may otherwise have done had things been different. A giggle is something I could have easily taken for granted once the novelty wore off.
Now that Ted’s baby sister is here I am experiencing a more typical version of motherhood. I’m already finding her development endlessly fascinating. I can’t believe how much and how quickly children learn, although I’m in no hurry to encourage her to meet those milestones too quickly. Bedelia is beautiful, energetic, headstrong and her mere presence has been both challenging and healing for us all. It introduces a normality to the family after years of experiences that others do not share nor fully understand. Yet it also highlighted just what we were robbed off and how things should have been with Ted.
Parenting Ted has taught me empathy, patience, humility and the importance of asking for help. With a severely disabled child motherhood is not a one-dimensional role. I need to be his friend, nurse, advocate, therapist, PA, carer, facilitator, protector. I must be his voice and his ally. Like anyone’s experience of being a parent it is exhausting, frustrating, challenging, but also joyful and exhilarating. Above all it’s a privilege and I wouldn’t have it any other way.