Every parent knows raising children comes with many rewards and many challenges. As kids develop, you constantly have to learn new things and adapt to changing situations. It can be a rollercoaster: a mix of indescribable, unconditional love, challenges and worry. Lots of worry.
Being a parent with chronic illness brings its own difficulties, most of them massively underpinned by guilt. Guilt that somehow, we’re not good enough, that we are failing our children because we cannot give them the childhood we see on TV and in magazines. You know, the one where the parents chase after the kids in the woods for hours, or where a family runs around the beach flying a kite. Hundreds of images of parents throwing their kids in the air, carrying them on their shoulders and a host more of the energetic stuff that someone with MS’s nightmares are made of.
So what if I told you that being a chronically ill parent can be a really positive thing for your kids? What if I told you that you can actually rock this motherhood thing anyway?
The good outweighs the bad
I just love a list, so I made one, outlining the pros and cons of parenting with MS. This is how I came to realise that there are far more positives than negatives when it comes to parenting with MS.
On the negative side, it’s true – we do struggle with a lot of the physical stuff.
Everything we do must be planned very carefully with many breaks scheduled in. It’s very frustrating for me to forget school stuff and seem generally unorganised. However the biggest challenge for me is the inevitable noise of childhood. I seem to have a hard time tolerating it these days and I have to remove myself from the situation much more than I’d like to.
While most of these would sound familiar to most parents, and those with MS specifically, they can be managed easily enough. We plan days in a way to make them more manageable. I always carry a diary to help overcome my forgetfulness and when things become too loud I retreat to a quiet room where I can regroup.
3 important qualities children learn
I’m a strong believer that children should not be overly sheltered from the realities of life. I don’t think it makes sense that everything should be perfect for them until they grow up. How will they prepare for the real world otherwise? Obviously this should be done in a way that is age-appropriate, but I firmly believe children will benefit when they learn the following:
The most important thing our kids learn from us is to be compassionate about someone less fortunate then them. It’s OK for them to see your struggles. I’m not saying you should share your deepest darkest fears with them, but I don’t think there is any harm in them knowing that you are differently abled to other people. I hope to teach my son to be tolerant of all different abilities and to see the person behind the disability.
How we deal with misfortune is one of the most important things in life and a big lesson to our children. If we are open about it we can teach them to be strong when the chips are down. I hope to inspire my son to tackle anything that comes his way, head on. More importantly I’m also conscious to not hide away when things are getting to me and to explain when I’m struggling. He needs to learn that it’s OK not to be OK. He knows I need time out to look after myself. Hopefully, learning from an early age how we make it through the tough times will make him able to cope with whatever life throws at him.
As kids develop, it becomes very important to them to feel a measure of independence. They love to be trusted with doing things by themselves. I can see my son really thriving when we give him new responsibilities. He loves to help me with difficult tasks. I often have him running up the stairs quickly to fetch something I’ve left behind. He also knows that I struggle to do fiddly things with the numbness in my hands, so he loves to help with this. It helps him be confident in doing tasks independently, and he has just discovered how much he enjoys washing up! Shh, don’t tell him yet...
Kids are more resilient than we think. If you explain it to them in a way they can understand, they can deal with adversity surprisingly well. Besides, there are many lessons to learn from a parent who can’t only be fun all the time. My son is my top priority in life, and I hope not just despite my illness, but because of it, he will grow up to be a compassionate, resilient and independent man.
UK/MED/19/0064 March 2019