A mother and chronic illness

by katie swann

Being a mum is hard. Being a parent is hard. Being a family is hard. The minute I gave birth and the tiny little bundle of amazingness had entered the world my whole perspective on life shifted. My priorities shifted, my emotions shifted, my heart filled with so much emotion and love that it literally took my breath away. I knew instinctively when my baby was placed in my arms that I would do anything for this tiny defenceless human being, I would move mountains, I would walk through fire, I would give my life to ensure that their life was perfect.

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When I had another child my love for my first (and then second as I have three children) didn't reduce, my heart just expanded and that love that I held for my first child, that I thought couldn't be any more fierce or intense or passionate grew. When I thought I couldn't possibly love anything else as much as I did my first child I found a new version of myself that had a new amount of love and emotion.

Unfortunately you don't get an instruction manual when you have a child and once the initial elation of bringing my children into the world calmed down, I was then overcome with the seriousness of how much my life had changed. This fierce protective instinct that I never knew existed kicked in. Then I was wracked with the knowledge that I was solely responsible for making sure my child (or children) had the best life I could give them. When that knowledge kicked in I literally felt like I'd been punched in the stomach. I remember holding my eldest, my son, and feeling so overwhelmed. I mean I'd never even managed to keep a pot plant alive for more than a few months, how was I going to manage to nurture and cultivate this tiny person? Being a mum I have been constantly wracked with concern and guilt. Constantly wondering if I'm doing the right thing? The wrong thing? Have I done enough? Second guessing myself time and time again over my ability as a mother.

As my children grow I'm repeatedly faced with new situations, new obstacles, new questions, new emotions that make me again question my ability as a mother. I'm continually asking am I good enough? I've lost count of the times I've felt I've failed or that I'm lacking somehow. And being lucky enough to become a mum for a second and third time I was wrong to be thinking it was going to be easier. Oh no sir! I was still assailed by all these feelings, all these questions, all these challenges and obstacles, because no child is the same. As my heart grew each time I gave birth to my children as did these feelings. Being a mum I had always come last in my list of priorities. I always put my child's needs and wants before my own. I would literally give my children every last piece of myself to make sure they have everything.

So there I was pootling along trying my hardest to be the best mum I possibly could, trying my hardest (sometimes to my own detriment) to make sure my children were happy and had all they needed (if not always what they wanted!) with all these emotions, all these self doubts, all these questions, all these fears when bang! Suddenly I'm struck down with those dreaded three words.... FUNCTIONAL NEUROLOGICAL DISORDER. Now I know a parent with an already existing chronic illness must face different challenges and go on a different journey with motherhood than my own. I've been fortunate to experience life as a mum as a relatively healthy person. This though I feel makes living life as a mum with a chronic illness even more difficult, more frustrating, more emotional, because you and your children have experienced a totally different way of life. Suddenly that life was not only ripped from me but it was ripped from children and my husband.

Everything we thought we knew was turned on its head. Those emotions I felt were then magnified. I couldn't do what I used to do as a mum, I couldn't protect my children from the harsh realities of life. I couldn't be the strong, independent, invincible role model I always tried to be. FND has meant my children have now seen me broken physically and mentally. This is the one thing I never ever wanted my children to have to experience. I've now been wracked with even more feelings of guilt and felt like a failure more than I ever thought possible. My children have had to see their mum go through things no child should see. Seen me have seizures, experienced me being rushed off in ambulances and spending time in hospital. Seen me struggle with simple daily tasks. They have had to not only help around the house but have to help me with more personal tasks like doing my bra up, brushing my hair, doing my trousers up (to name a few things).

I know my children have spent days at school unable to concentrate because they are worrying about my safety, worrying I might not be at home when they get there because I've had a seizure or I've fallen. If they hear a bang indoors they come running because they panic something has happened to me. They have been pushed from pillar to post because of emergency hospital trips or the numerous appointments far and wide. They have had to adapt to a life as young carers to a life with a disabled mum. The times my heart as broken seeing them upset because they want their old mum back, because they want to do the things we used to do. Knowing how desperate and desolate they feel because I feel exactly the same. Hating that at times I have had to put myself and my health first. Had to miss out on assemblies, had to deny my children having a sleep over or get them to cancel play dates because I'm just not well enough. I've felt so guilty because they haven't got their old carefree life with their old healthy mum.

But I have had to make myself stop and take stock of our situation. I've had to stop living in the past and stop my children living in the past. I needed to actually see what was standing right in front of me..... and that was three incredible, amazing, beautiful, unique individuals who despite all that has happened are still full of life and who are still going to have all I dream of for them. I needed to remind myself I am still the same mum I was, I am just a new version of that woman. I just do things differently, we as a family are still who we were, we just do things differently. We have adapted and we have overcome so much. I need to celebrate that, we need to celebrate that. It's taught me to live in the present and to be present. Time flies by and no matter what happens I need to enjoy every minute of my children, of being their mum. I need to remember they get a lot more of not only my time but their dad's time as he has had to give up work to be my full time carer. We might not do as much physically as we used to but that is a blessing because we have slowed down and are taking time to enjoy our time together.

Yes we all live with all that FND brings but it has made us stronger as a family finding new strengths we never would have found in our old lives. I'm a mum, I'm always going to feel I'm lacking, that I could have done or should do more, I'm always going to question my decisions, my actions but that's because I'm human. I've accepted now that I don't know all the answers, no one does. But I know I give every last piece of me to make us as a family happy, despite what befalls us. All of this has made my already awesome children even more awesome. They have become independent, they have learnt important life skills, they can now cook meals from scratch including preparing and sometimes cleaning up! They can help run a house, they are now more empathic, more caring, more sensitive to people's needs. The way they think of others needs and feelings is of that of an adult not of the children they are. This has given them a head start on life, for all of this is going to benefit them now and in their future far more than it will disadvantage them.

My husband and I are blessed to have these three astounding little people in my life and above all, despite FND and all it has brought to our lives, we are blessed to have each other and we are blessed to be the family we are. We might not be perfect but we are perfect together. I will do anything and everything to keep us, my family happy.


To learn more about FND, please click here.