Jenny Parenting with Progressive Symptoms:
The Ups and Downs
If you are parenting with progressive symptoms due to illness, you’ll know that it adds a whole new dimension to parenting. When I initially had children, although I was already diagnosed with Multiple Sclerosis, I was told by my healthcare providers that it was unlikely to get worse because I’d already spent years with very few symptoms. Yeah, right! That all changed my children were young and my Multiple Sclerosis became secondary progressive in nature.
The Early Years
I found it a lot easier to deal with my progressive symptoms when the children were at home with me – they didn’t realise that I was any different to other mums and were probably too young to notice anyway. I was able to lean on my daughter’s pushchair when my leg started dragging and my son was a typical whirlwind of a pre-schooler, not taking much notice of other people!
It’s when my little boy started school and my mobility became even worse that I really started noticing how my progressive symptoms impacted my parenting. I suddenly realised that I had to give myself more time to walk to school and was the only parent who had to sit down on the children’s benches outside whilst waiting for school to let out. Soon, I was the only parent who used crutches every day.
Progressive Symptoms Increase – Zooming Mum
Looking back, I realised that was my easiest time parenting with MS – I still had the energy to go and pick my little boy up every day. As time went on and both my walking and fatigue worsened, I had to use a mobility scooter or start relying on others to pick the kids up from school. I’ll never forget the day that my son told me that he preferred it when I used my crutches instead of my mobility scooter because I looked more “normal”. I understood that – do you remember being young and being so embarrassed just to be seen with your parents? I do and my parents were able-bodied.
My son is 13 now and at a new school where his friends don’t realise that I have to use a mobility scooter. I know that he’s reluctant to tell them and I’m also aware that at some point it is likely that they will see.
What’s the Answer?
So what are we – parents with progressive symptoms – meant to do about it? To be honest, I don’t think there’s very much that we can do apart from understanding where our children are coming from and to model acceptance to them. I am not embarrassed by my use of mobility aids but I know that is typical for a child to be embarrassed by any parent who is seen as ‘different’.
Parenting with progressive symptoms can be very difficult at times. We have to find ways to parent despite our illness and symptoms, for example by having more quiet days at home. We might not be able to do the things that our children want us to be able to do or be the same as their friends’ parents. Sometimes, we need to put ourselves in our children’s shoes, to remember how we were with our own parents.
Read More: Supporting Children When a Parent is Chronically Ill
I know that helps me to think of the positives of parenting with a chronic illness. I like to think that my children are growing up to be patient, caring and accepting of others and their differences. In fact, one study says that children themselves often feel that they are more empathic and have higher personal competence because they have a parent with MS (source – British Journal of Health Psychology).
I don’t know about you, but I would be very happy for my children to feel the same?
Ongoing Thoughts…
I think that it is a topic that I will always be aware of… the same studies talk about how children of parents with MS can also, perhaps unsurprisingly, experience negative life experiences. My children have been registered as ‘Young Carers‘. This means that their schools know that the family and child may need extra support at times. Although neither of my children makes use of them (as yet), there are also young carers support groups and meetings arranged by the local council. An example of how registering the children as young carers has helped me specifically is the fact that my daughter was able to continue to access school during the first lockdown in order to maintain some normality for her and me. I decided to take up the offer as we had very low Covid rates where I live.
I am lucky that their father is very much there for them (and me, despite our separation), as are our extended families. But, like every parent, I am going to be super aware of the kids’ health (physical and mental) as they continue to grow into young adults and hope that I can support them as best as I can, despite my progressive illness.
Is this something that you have had to think about?
Love and light
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