I am a Mum
My son was four months old when my first obvious MS symptoms presented themselves to me for the first time. By the time I reached my diagnosis he was eighteen months old. The decision to have more children was not an easy decision though it was a decision that came quickly. Not wanting to play the wait and see game, we jumped in and starting trying to conceive. We had always said we wanted to have two children, of course no one could have known that after many false starts and gut wrenching loses, we would end up with twins. Suddenly here I was a mother of three children under three years old, with Multiple Sclerosis on board for the ride.
Countless times since having my twins, (actually come to think of it I was even asked this question while pregnant with them) I have been asked, ‘how do you do it?’ My answer is always the same, ‘I just do.’ Fact is, I know no different. I have always been a mum with a disability. Yes, there were the four months when my son was born, though honestly between the sleep deprivation and adjustment to having a baby, it was just like having MS at times. My children have never known any different either, they have always known mummy needs extra sleep some days, or she moves slower, and her legs sometimes don’t work so well. This is my family’s normal.
It has been for this reason I have been able to wait for what I felt was the right time, to have the chat with my son. That opportunity has only just come about recently. He is now eight years old and the other day as we walked out of school I asked my children to slow down and told them mummy was moving a little slower today. ‘Why?’ he asked me casually. My reply was again a standard reply I give everyone. ‘Its just one of those days’ I said. He looked at me and nodded. He then went on to hold the door for me so I wouldn’t have to negotiate by myself and ensured his sisters didn’t run ahead. He showed maturity and understanding that hadn’t been there before, and I knew in that moment, he was old enough for me to explain the big picture.
Now that the moment was here, I was a bit taken aback by how nervous and anxious I was about the impending chat. In all honesty I think I would have preferred to have been sitting him down to talk about sex, rather than about how his mummy was broken and it was a broken that couldn’t be fixed. Not just that, it was a type of broken that was going to slowly and increasingly continue to get worse. It made me feel vulnerable like never before. The idea that I as my child’s super hero was about to introduce the unwanted side kick, who had weakened this super hero’s resolve. Here I was about to admit openly that I his mother, was indeed not perfect. Mind you, somehow I think he had worked this out long ago.
I decided to appeal to his keen interest in science while taking advantage of his quirky sense of humour. After explaining the ins and outs of the central nervous system and immune system function, I went on to explain the great war that happens when they don’t get along anymore. We call this war Multiple Sclerosis, and unfortunately it is taking place in my body. There are no magic wands or medicine to fix it, and the immune system is currently winning the battle! There was the candid pain in the bottom joke thrown in for affect and the chat was done! Somehow I had managed to deliver what could be frightening and devastating news to a child, in a light hearted meaningful way, and I have since seen proof that the message got through! Phew! Tears and sobbing averted! Carry on as usual!
The decision to have children when you have a disability is not an easy decision to make. It is a highly personal one, which no one but the future parents can make together. From my own personal perspective, I had to accept that I was not going to be the parent I envisioned myself being. Having always wanted to be active with my children, with plans to take them bushwalking and rock-climbing off the table, I had to change my parenting ambitions. I have become highly adaptive, and learnt to focus on the important stuff and let go of the smaller stuff. Some days we get it wrong, and others we get right. Though all parents could say that, disability or not. If my children grow up with a sense of empathy, inclusion and acceptance for others, then this to me now outweighs all the experiences in the world.
There have been some rough days, when spoons are low and its only Monday. The days when the pain is all consuming and after getting through the and the children to bed, I have nothing left for me. Those days are draining both physically and mentally, however those days are few in the big scheme of my life as a mother. I remind myself, it’s a bad day, tomorrow we start afresh. So, knowing what I know now, would I still chose to have more children post diagnosis? Yes, in a heart beat. For it is my children that give me incentive to never give up. It is for them that even on the worst of days I push through (and yes collapse at the end of the day) so that I am always present for them. Their love for me, and mine for them is bigger than all the pain, struggle, fear and anxiety that comes with my MS. They like my husband are my heart beats, balancing out the negatives that come with having a disability or chronic illness. My children are the best thing I have ever done!