Mummy Dearest: Mothering with a Chronic Illness.

Being a mum is hard work. There's always someone waiting for the opportunity to chastise you for the way you are raising your children.

• If you work, you are neglecting your children and contributing to their delinquency. 

• If you put your kids in childcare, well it's time to call child services as you have apparently condemned them to a life of under achievement and attachment disorders. 

• If you stay at home, well then you are a worthless woman not contributing to society and providing a poor example to your children, that says a woman's only value is in their ability to cook and clean. That you are raising a generation of over-reliant, self-indulgent kids.

It's The Scarlet Letter all over again. You can't win. Add chronic illness to the mix and you might as well toss it all in and move to a desert island somewhere in the Pacific.

Every woman has a close personal relationship with guilt. If you’ve popped out one or more rug rats then you truly know what I’m talking about. Guilt is one of the unglamorous side-effects of pregnancy, like the haemorrhoids and excessive flatulence that our mothers never warned us about. When your milk comes in you get a simultaneous lifetime supply of guilt to boot; would you like fries with that? You beat yourself up constantly for all your failings as a mother. Even prior to becoming ill I always felt guilty about my mothering. As a mum you always believe that you are not giving all that your kids need, be that time, love, or after school activities.  Regardless of the reality of your situation. 

 

We all compare ourselves to little Johnny’s mum. You know her. That woman with perfect hair and coordinated outfit, who attends all the excursions, bakes cookies for class, iron’s little Johnny’s uniform perfectly, makes the perfect nutritional lunch and is a clone for Mrs Brady. God how we hate her! However, introduce her to Bob or one of his mates and little Johnny will be rocking up (late of course) in yesterdays grotty jumper and unmatched socks, with a jam sandwich and piece of plastic cheese in his lunch box. 

 

Bob adds a whole new level of guilt to motherhood. Having Bob in your life means that you simply can’t attend every performance or sporting match; that you forget to hand in the excursion notes or to wash the uniforms. It means you can’t drive your child to a play at a friend’s house, or take them to the show. 

This is when guilt goes into overload. You don’t need anyone else to tell you should feel guilty you “know” you are the world’s worst mother. I truly realised the impact Bob was having on my family’s life a few months after he started hanging around. My eldest had just started high school and there was an information night. We drove as far as the end of our road and I had to pull over.  I was shaking uncontrollably, and could barely focus on the road. We sat on the side of the road for 30 minutes with my head between my legs until we could drive back home. We never made the information night.  It signaled the start of the kids missing out. 

 

They have put up with a lot over the past three years. It scared the hell out of them and I was too ill to either fully realise, or comfort them. It was only a few months ago that my youngest could finally tell me that he had thought I was going to die. It felt like someone had reached in, ripped my heart from my chest, threw it on the ground and stomped it into oblivion. I just wanted to reach out and wrap him in my arms and never let go. An 11-year-old (or as he was then, eight) should never have to deal with such adult issues, the guilt was, and is, overwhelming for putting him in this position. Even my stoic eldest was suffering in silence; he just didn’t want to worry me. A 14-year-old shouldn’t be worried about whether or not his mum will be able to drive home safely from his bus stop. He should be thinking about girls and friends and being a normal obnoxious, self-absorbed teenager. 

You don’t choose to have Bob in your life but you beat yourself up every day for the burden you are placing on your family since he came to stay. 

 

Since Bob came into my life I have quite simply been unable to be the mum I want to be. When you are sick and exhausted you yell.  You have no patience.  You are unable to tolerate normal kid behaviour. Music, laughter, horseplay, the word “mum”, dirty socks on the floor, all can become torture to the soul when you are sick. You overreact, and you beat yourself up for it after. It's so important to apologise to your kids when you are more together. To give them a hug and let them know it isn't about them. To let them know that even mums can make mistakes, but that it doesn't stop you loving them. That you are human after all.

It's important to remember that the ridiculously unattainable, high standard of motherhood that we set ourselves is not reality.  It is the product of the Hollywood fantasy machine. Lets face it, Angelina Jolie is portrayed as the epitome of motherhood yet she has a cast of thousands to help her including nannies, drivers and personal assistants. I hardly think she was doing loads of washing and picking up toys after she popped out her twins. And my Hollywood Posse? Lets see. I have me, my temperamental body, my fog brain, a busy husband who helps when he can, and two kids who try to help but are in reality, kids. This is reality. Even if you are lucky to have friends and family they are not with you 24/7.  So why should we expect that we would be able to be Angelina or one of the many other Hollywood fantasy mums, especially when we are also ill? Would we expect it of others? No. So why do we expect it of ourselves?

Underneath it all kids really don't care about attending the latest movie or going to the pool on the weekend.  Not that they wont pout and slam doors, they are kids after all.  And we are dumb parents who are evil and stupid and just don't understand. What kids want is your time. Its hard when you are ill to have the energy to interact with yourself let alone your kids, but even sitting on the couch together watching TV is valued by your kids because you are there.  

One of the things I missed was what we called MLT time (Mummy, Liam and Thomas time). This is something I had done with my boys since they were little. Every week we had a standing appointment. After school on a Wednesday we would go to a coffee shop and have hot chocolates, or lime spiders (gross, never understood that one) and coffee and cake. We would spend the time catching up and chatting about school, friends, life everything. It was time specially dedicated to them. The along came Bob and it was no longer possible.

We didn't have MLT time for a long time.  My health simply wouldn't let me sit in a cafe for any length of time.  And I was pissed.  So started thinking outside of the box.  One of the things we tried was making a time after school, but at home, to have hot chocolates.  We'd sit around the kitchen table, or on the couch, and chat. They appreciated the effort so much, even if I was mindless zombie mum. Over the next 6 mths we were able able to do the old MLT time.  Not as often as I'd like, and we have to suss out whether the cafe has a couch and a loo. If they have an air conditioner or outside seating.  But we were doing it. I didn't realise how much they appreciated that little bit of time, until they told me how much they'd missed it and were glad we were doing it again. This is two boys, one of which is now 15-year-old teenager! Who would have thought they'd miss time with their mum. 

 

I still feel guilty about what I can't do (I think that is imprinted in my mothering DNA), but I know my kids appreciate what I can do. Your ability to be a mum is not measured by attending 16 different after school activities, or every play. Its about doing what you can.  Putting in the effort to show them how much they mean to you, to show them they are still special.

Some lollies on their pillow when they come home from school.  Bringing them a hot chocolate in bed.  Making their favourite meal (even if it is foul tinned spaghetti).  All of these little things show that you care.  That you think of them even when they are not around. All of them are things you can do even when you are ill. 

Being ill makes you re-examine what it means to be a parent, it doesn't make you less of one. It gives you a chance to work out what is important, to find a new way to be with your kids, and in many ways your kids will be the richer for it.

Cheers

Michelle :) 

(This is a re-post of an article I did for the Dysautonomia support group 12 More Pages in 2009).