Parenting with Multiple Sclerosis – Patricia’s story

Parenting with Multiple Sclerosis brings its own unique challenges. I am grateful to Patricia for sharing her individual story of living with Multiple Sclerosis and being a mum to Elliot.

Parenting With Multiple Sclerosis

“Six months after my miscarriage I was ecstatic to find out I was pregnant again. It was a long and nervous nine months that followed. Then a difficult 14-hour labour, ending with an emergency caesarean section. But all 10lbs and 3 ozs of the wonderful, healthy baby Elliot had arrived safely in this world. We were over the moon and almost instantaneously forgot about the difficult road we had walked together to become parents and to have our precious baby boy.

 

The days and weeks that followed were to be expected. Sleepless nights whilst breast feeding on demand went hand in hand with tiredness and emotional turbulence. But what was not expected was my lack of co-ordination and wavering ability. My fatigue was overwhelming and when I started to lose feeling in my feet and abdomen panic set in. Doctor after doctor diagnosed exhaustion and post-natal depression. I knew instinctively there was something more sinister wrong with me, so I pursued the matter with greater urgency as each day passed. Eventually referred to neurology and put through months of tests, scans and waiting. Weeks before Elliot’s first birthday I was diagnosed with Multiple Sclerosis. My immune system had attacked itself in error, confused with the foetal cells after the birth. The timing was cruel.

It really did all feel impossible now. The first year of Elliot’s life was an indescribable roller coaster bringing the most wonderful highs, through the joys of motherhood, running parallel to those terrifying lows of cold hospital tests, unbounding fear and my body’s betrayal.

With a diagnosis of a long term progressive disease alongside my bouncing one-year old boy I was lost to begin with. But I wasted no time in acting on the day of my diagnosis and headed straight to the bookstore, with Elliot safely tucked up in his pram. I bought the Self- Help Guide to Multiple Sclerosis by Judy Graham. And that was the beginning of a new and circuitous journey for me and Elliot and our small family.

I had a chronic disease, but I was a mum first and foremost. That gave me the lethal determination necessary to not accept my medical prognosis of a life towards disability and vulnerability. To reject the toxic drugs and their side-effects, which had no proven success in treating MS. Instead I would set off into an unknown world to find ways to manage my symptoms, to try and heal my body and my mind. All I was sure about was what I did not want. I did not want to be a sick individual, but more poignantly a sick mum. I did not want anyone else caring for Elliot and I refused to even contemplate that anyone else would need to care for me. I did not want Elliot coming home from school to a sick mummy or to hospital visits. I had dreams of motherhood and family life. I had dreams for my child and his future. Multiple Sclerosis would not stand in the way of those dreams. I did not know, to begin with, what I would do and how I would do it. But I had my unyielding spirit and relentless perseverance to face whatever lay ahead. And I had my son’s future hopes and dreams in my hands. To anyone who thought that what I was going to try and achieve with my medical prognosis was impossible, I would say to them to get out the way whilst I got on with doing it.

Elliot meant so much to me and it had been such a challenging road to bring him into the world. My feelings as a mum were so strong and powerful that there was no possibility I was going to surrender to this disabling disease.

Day in and day out I would find new ways to do old things. I would turn negatives into positives. Fear into hope. Anger into love and disability into different ability. My future would be different, but I set out to make it positively different for myself and my beautiful son. Elliot and Multiple Sclerosis may have been ‘born together’, but it was in my hands how they would grow and live together.

I have written a book about my compelling and uplifting journey, Born Together. You can find out more information www.patriciagachagan.com

 

Are you parenting with Multiple Sclerosis? What is your story and what has helped you to cope?

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