When I die

Ever since becoming a mom, I started to grow more preoccupied with my own mortality. What happens when I’m gone? As far as my oldest daughter is concerned, like any parent, I try to prepare her for life as well as I can. To my best ability I am raising her to feel empowered and to be independent. But bringing up my youngest, my special needs daughter, is a totally different story…

She has absolutely no self-sufficiency. She needs comprehensive help with all normal daily activities, such as: getting dressed, eating, washing up, etc. So, raising her is much more of a challenge. There can be no talk of independence at all. 

Now, I have always found ‘death’ a very stupid concept, but ever since becoming a special needs mom I’d rather do away with it all together. I mean, I can’t die! Not anymore anyway. I need to live to be at least a 130 years old, I calculated. Because what will happen with our special needs little girl, when my husband and I are no longer there?

Credit: maximkabb, 123RF Stockfoto

Who will cuddle her like only we can? Who will ‘read’ her non-verbal signs like only we are able to? Who will know exactly what to do when she gets overwhelmed? Will she still experience the feeling of true love; feeling love in every fiber of her being? Who will make her feel that she is perfect the way she is? Who will cherish her? 

Choices and unconditional love

My special darling is only 6 years old, so we still have a lot of different phases to go through. One day we will probably have to make a choice about living arrangements for her, for instance. I am well aware of that. We also have to make sure that all our affairs are in order for when we are no longer there. And we will have to discuss this with our eldest daughter. Does she want to help take care of her sister and in what way does she want to do that? How can we help her now so that everything is well taken care of for her and her special needs sister?

We will gradually grow into this one step at a time. We are good at organizing and arranging all the practical stuff, so I think we will find our way. That is not what keeps me up at night (yet). However, what does cross my mind when the world is sound asleep, is: will my special needs sweetheart still feel as cherished as she is now? That’s what concerns me. 

One evening my eldest, not aware of my worries, comes with a moving solution.

During diner we’re talking about homework, a school test result, work and our plans for the weekend. Then my nine year old tells us that she wants to be a mom when she grows up: ‘One or two children, perhaps, and then my sister can also live with me.’ My husband and I look at each other with surprise. ‘Are you sure?’, I ask her. ‘Yes, because then I can give my sister her meds and such, because who else is going to do that?’, she replies. ‘The only thing I can’t figure out is when I’m old and I die. I am not sure who will take care of my sister then. Maybe one of my children can do it.’ I tell her that this is a very good idea, but that we’ll discuss this when she’s a bit older. I explain to her that we do not want her to feel pressured in any way. ‘I don’t feel any pressure, Mommy. This is just something I want to do. And you know what, later when I die I will just take my sister with me. We’ll go together.’, she concludes.  

How extremely lucky I am, to have a child that solves all my worries and life questions before dinner is over!

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