I am a 39-year-old Mum of two and have Secondary Progressive Multiple Sclerosis. I was diagnosed in 2008 when my son was 3 months old. It affected me invisibly until a year after my daughter was born, then it took a nose dive!
I now walk with 2 sticks and need to use a scooter to get around as my balance is poor and I get so tired with the effort of walking.
I wrestled with what to tell the children about my disability. As a Mum I want to protect my children from bad news, but as my disability became more obvious and harder to hide I realized I needed to come clean and explain.
I sat my son down with an MS Society UK leaflet and was amazed at how engaged and interested he was. He proudly took the leaflet into school for ‘show and tell’ to share with his class and I was so impressed with his attitude. His friends take it all in their stride and think my scooter is cool. It’s normal to them .
When my husband goes to work my son has to help me out with cooking and cleaning up, which I sometimes feel guilty about. I cook sitting down, and as my balance is bad it’s impossible for me to carry food to the table so my son does it for me. He helps fetch and carry things when it’s bath time and can even lift my scooter out of the car when we go out! I’m waiting for a hoist to be fitted, which will be life changing as I’ll be able to take the children out on my own. My daughter also enjoys helping Mummy with little things like finding my shoes or fetching my walking sticks. She loves having a ride on my scooter too!
Although I worry about all the things I can no longer do with the children (swimming, running, play fights) I am also proud of all the things they’re learning about people. They are not scared of disability and realize everyone is different. They have compassion and insight into difference and disability and are more tolerant as a result. My daughter said recently, “Mummy can’t lift me up and carry me but she can give the best cuddles”, which sums it up really.
MS has forced me to reduce the amount of work I do and I’m grateful for how “time rich” I am as a result. I’m there to help my son with his reading and spelling homework and have time to hear about the children’s day and be interested in their little lives.
Children are so resilient and adapt to anything as long as they feel loved and supported. Mine have grown up with my disability, and I hope the experience will help them grow into more rounded adults.