I found this scribbled note I wrote in desperation on holiday last summer when Sofia was 17 months old. It’s painful to revisit one of my darkest moments of doubt about the whole enterprise of having a baby with ME. Yet makes me realise how far we’ve come since then:
August 2006
Will this ever get any easier? When Sofia starts to talk properly and walk more reliably, will she feel more like my girl? Or will her growing up and needing ever more stimulation and energy mean she’ll grow ever further away from me, who can’t satisfy her needs?
I’ve spent most of this holiday heartbroken. Watching family members play with Sofia and follow her in her inexhaustible wanderings; taking possession of her when she wanted to be ferried about in their tireless arms. Frolicking in the sea with her, yet protecting her with their strong embrace. Making her giddy with delight with their japes and capers that exhaust me just to watch. I’ve felt like my little girl was being seduced away from me and taken far far away to a world of fun and entertainment that I can’t reach. She barely notices my presence. I’ve become a pale shadow that struggles to repossess her for her sleeping and eating, overcoming her resentment at my ending the fun.
How can she ever love me? Me who can’t give her any of this joy, who falls behind her rhythm after 10 minutes and turns to stone, me who often can’t even engage with her due to sheer exhaustion, let alone transport her into my experience?
I feel robbed, bereft and bleeding. But it’s no one else’s fault. They are just responding to her in a way that I can’t. The tragedy is not other people stealing her away from me. The tragedy is that I’m deeply disabled and can’t participate in my daughter’s life more than in certain limited ways. I’ve maximised those ways as much as possible – reading her books and singing her songs and cuddling up with her on the sofa – and I’ve struggled to get through the day alone with her. But it’s not enough. It’s not nearly enough. I’m missing out and will go on missing out as she grows up in ways I can’t even foresee now. I’m excluded.
The good news is yes, it has got easier. Sofia’s developments in walking and talking have brought us infinitely closer, not further apart. As long I love her in the best way I can she loves me back more each day. I’m more confident in what I can and do give her and more accepting and happy about the things she gets from others that I can’t give her.
About Me
- Catherine Hale
- I had had severe ME for 16 years before I had my two girls, Sofia and Rosa. During those years ME prevented me from working, socialising, getting out of the house and sometimes sitting up or feeding myself. So having a baby was the biggest gamble I have even taken. My lack of muscle power and stamina meant I could barely lift or carry Sofia from when she was born and needed full time support with parenting. The folly of having a second child came with an unexpected improvement in health. My ME has gone from severe to moderate. I wrote this blog from 2006 – 2007 to record the joys and blessings, as well as the difficulties, of being a sofa-bound mother. And also to pass on tips to others who might travel the same road.
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