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I am a Mum

4 April 2016

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!

Comments (16)

Another piece of great writing, I cried while reading this but it also made me smile! Thanks for sharing..

Wow. This showed up at just the right time! As a mum of also 3 (twins included) I need to learn from you. A bad day today and seem to be taking it out on the kids. Thanks for your sharing and thanks for making me think about how I can change my outlook.

Thank You for your comment. Those bad days are hard, and I allow myself to have them and try and not feel to much guilt. I always make a point of apologising to my children when I over react or feel I have taken it out on them. They need to see I am as human as them and make mistakes. Hope tomorrow is a better one for you. x

What a lovely piece. Parenting is hard always. Throw in a disability and I can't even imagine! Sounds like you are doing a great job, for you and your family. Regarding being a different kind of parent. Have you heard of geocaching? It's an activity that can get you outdoors with the kids, but it can also be quick and easy. When you are having 'good' days you can go on a longer walk. On not good days you can park and grab. Check out geocaching dot com There are also puzzle caches that you have to work out at home before you even head out to find. A nice activity on those tired days. Wishing you all the best for whatever comes in the future. Thank you for sharing. The more we know the better we can understand Regards. Alexis. A mum of three also but no twins!

Hi Alezis. Thank you for your comment. I have heard of geocaching a few years ago, though found it hard to do at the time. Now my kids are a bit older I think I might check it out again. Thank you for mentioning it. Sending you smiles. Amber

Amber, hunie I am in awe of you! What an amazing mum you are, you inspire me so much:) Xxxx

As always your authenticity shines through! Your children have a true gift in their mother . I like the sensitive way you Were able to intuit How and when to talk to your son about the MS.

Although I only have one child I get it. The one thing I will say as a mother with MS on my quest to recovery (thank-you OMS) is to never, ever give life to the MS getting worse! With all the research and options today we have so much hope compared to many who walked this journey before us. I have always been upfront with my daughter and like you, have many a time apologised for an outburst or moment and explained myself. Certainly now she is six can see her compassion and understanding for the most part. Yet, I will never give life to the idea of getting worse!! I know many of us may experience setbacks and new symptoms, I understand this. I see many mention and discuss it in the various forums. Keep searching for the magic formula for you. I'm finding it with working on what I feed my mind, who and what I surround myself with and dietary and lifestyle adjustments - It helps and I will say it again, getting worse is not a part of my vocabulary!! Stabilise and improve is my motto, won't speak or hear of the opposite. Apologies for hi-jacking your beautiful post but this point jumped out at me. I believe in our ability to heal too much to not say something as I love your writing Amber and I believe in you. Setbacks happen, they can be reversed though. Believe me they can and they will.

Hi Robyn Thank you for your comment, and it is always welcome. I love hearing from others in regards to what tools they use to get through the difficult times. Thats the thing with a community like ours, we can learn from what works and doesn't work, while still living our own individual stories. I think it is so important to view other peoples beliefs and choices with objectivity and openness. While respecting that their choices although may not be in line with my own, have no doubt been made for their own reasons. Smiles Amber

This is so inspiring and lovely words ! My sister has ms and has 2 children and a very happy family who love for the moment and memories

Thank you for your comment Nicole. I hope your sister is doing well, and I am so glad to hear she has the support of family around her. Smiles Amber