1. The unknown. What does the future hold for me and my family? We have been told Ems is unlikely to live beyond primary school age (about 10), but who can really know that for sure? How am I going to cope? What support will we get if she survives beyond this, and into adulthood? Can we have more children? If so, how do I manage a new baby with Ems needs?
2. Lack of sleep. Ems is 9 months old and I know lots of 9 month old babies don’t sleep very well. But I am sure that Ems’ vision impairment and brain damage don’t help with her sleep regulation, and shhh-pat and controlled crying don’t cut it when it upsets her and makes her tone increase. And it doesn’t really help when folk try to say ‘try this’ or ‘try that’. I actually AM trying! And as a clinical psychologist I am quite familiar with good sleep hygiene. Thank you very much.
3. The lack of time with my husband. He’s busy working whilst I am at home with H and Ems. Then when he does come home I am so relieved that he can hold her. My body literally aches from her constant arching. When she does get to sleep all I want to do is go to bed too, because who knows when she will be up. But that means I don’t see my husband. He doesn’t share our bed anymore, mostly because Ems spends at least half the night in it.
4. Holding back on my career. I know lots of people feel they have to give up work when they have a child with a disability but I am not one of them. I would lose my mind. I used to work full-time and then I cut to 4 days. I’m going back for 2 days initially (next week, eek!) and, quite frankly, even though I am a bit excited it mostly scares me. How will I cope with the lack of sleep? I feel envious of my husband who gets to go to his work everyday- no children to organise in the morning, just gets up and out he goes. It doesn’t even come into the equation that he should cut back, being the bread winner. It’s all down to me and that has been the assumption. And even though money always wins out, I can’t help but feel somewhat aggrieved. I worked hard for my qualifications and I thrive in my work. I feel like I am at great risk of losing a rather large chunk of my identity in all this.
5. Going to healthcare appointments in place of baby massage, yoga, etc. I drove past the girls that I went to toddlers with several months ago. We all meet up now and again and though it pains me to watch how well their girls are doing, I am keen to keep in with them for my own sake as much as Ems’. But last week when I drove by them all as they were walking back from book bugs, I have to admit that all I felt was uncontrollable grief. The reality that my baby is so different. And I am not really a part of the typical mummy club now, am I? I am in a completely new place, one that I knew existed but that I never once thought I would be a part of.
theshockofitall 