There is a process of grief when you have a disabled child. As I write this, I feel conscious about Delph reading it one day. I’ve written about it before. I’m always trying consider how she feels. After all, how would I feel about someone writing personal matters about me? Ouch. As I get older though and I get more comfortable with my experience of blogging.. and blogging about personal matters… I feel more easy about it. I tell myself with increasing confidence, this is my blog. It’s my experience. And as much as I’d prefer to sweep them under the carpet, these are my feelings. So, although I have utmost respect for my beautiful and kind daughter, I need somewhere to let it out. So look away Dudu if you don’t want to go any further. Cause none of this is your fault.
Grieving for me started out as a pretty cerebral experience. It was, ‘What’s wrong with her exactly?’, ‘What will she be able to do?’, ‘What won’t she be able to do?’ and the always the last, most painful question, ‘Will she be ok?’
I think this was a different experience to Jack’s. He seemed to grieve from his gut straight away. At the time, I found his reaction difficult to cope with. From my point of view, I needed to deal with her diagnosis of cerebral palsy with a sonic gun ray of logic. I needed to see things properly in order to assess properly what the future held. I’m a worst-case-scenario kind of person like that. There was no room in the room for emotion.
Jack and I split paths on this reaction. Just when you needed spousal support, I resented him instead. I couldn’t talk to him. I couldn’t listen either. I felt like his focus on his feelings was akin to some kind of luxury. I on the other hand, needed to know what we were going to DO about it. Hands up; hard-nosed bitch.
Things have changed now. They always do. Ha! Yippee! With the benefit of hindsight, I think that partly life was difficult in those early days because simply speaking, we didn’t really know Delphine yet. Yep, she was a one-year old when she got diagnosed but she was still just a goo-goo-gah-gah baby. Kind of stubborn and knowingly comedic and frustrated when she couldn’t do things exactly right, but a baby. There is something to be said about getting to know someone. So, as she’s aged in years, we’ve had the luxury of getting to know her as we’ve all got used to our lives. Good times, bad times, we’ve done them together.
I still don’t have an exact handle of what’s going to happen. But I’m easier with it now. And Jack and I have finally learned how to talk to each other without one of us wanting to throttle the other. Such role models for disabled parents, us! All the while, I understand a bit more, usually through just living through a new sunrise and sunset everyday, how I feel about having a disabled child. Some of it is shrouded in shame. For example, I grieve for my lost freedom.
I was the independent, sometimes even reckless kid. As a teenager and young adult in London, I rode the Tube at all hours. I walked the streets with reckless abandon. Rode my bike wherever I wanted. And this was before there were so many bike lanes I may add. I travelled at will and mostly did whatever I wanted without needing to worry about any of it.
Maybe I’m being unfair. How can you compare your time in your youth versus your older, current life? And anybody with small kids will tell you that, unless cash flow is a completely unlimited resource, they probably don’t feel that free either.
What makes the disabled parent’s outlook different from regular parenthood then? Well, most kids grow up and don’t need their parents anymore. See ya! Except when they need money of course. Which can be painfully often. But still, as a regular parent, as long as you hold on, there is usually that letting-go period. It’s a wonderfully natural thing too; your child sets off to carve out their own lives.
Not with us. We don’t know for example, if Delphine will either want or be fit enough to carry on with her dance dreams into adulthood. Or her art. Or anything that she enjoys doing now. At this stage, we’re just living it. And in it’s own way, it’s a blessing. You meet interesting people, kind people and you see things that make you humble and happy and grateful.
But, in between all of this seeking out exciting new opportunities, I’m also more aware that I’m grieving the life I’ve lost. As long as Delphine is dependent on me, I can’t take off. I can’t do my bike tours of London or my late night, dodgy London Transport trips. Ever again. That last one might not be a bad thing. Still, when someone is dependent on you, you’ve lost your freedom indefinitely. Maybe you’ve lost it forever.
Id Doleo. I grieve. That’s all.