This article was first published on the MS Ireland 'MS and Me' blog site on November 27 2014
Writing blog posts for the 'MS and Me' website usually cost me nothing but my time and perhaps a bit of chipped nail varnish. This one has cost me hard cash. Let me explain. Given that I am writing about my children's understanding of their mother having Multiple Sclerosis for this blog, I decided that I should be rigorous in my approach and so, carry out some qualitative research and interview them.
The interview with my almost-seven-year-old twins went something like this ... Me, serious interviewers face on, with red pointy lipstick, notebook and pen in hand...
'Mya and Leon, you know the way Mam writes stories about MS for a website sometimes?’ Two suspicious faces look at me, none too impressed, eyebrows raised, nodding. 'Can I interview you both and ask you what it is like to have a Mam with MS?’ Their joint response? 'No'. I adopt a sad face. ‘Please? Pretty please? You are such good kids. It would make me really happy'. 'NO Mam, it's boring'. 'I'll pay you. This is REALLY important'. My boy barters with me on their behalf. 'We want two paper monies Mam. Two fives'. 'TWO fives !!' I can see from their faces that they mean business. 'Okay, that's one five each. Not two fives each. Deal?’
A deal is struck. We sit around a table.
'Right guys, do you know what MS is?’ Two blank faces look back at me, smiling. 'Do you remember when I explained to you about the little cuts on Mammy's brain and how they can make her sick sometimes?’ There is a faint look of this sounding familiar, but they say nothing. I'm a bit disappointed. I thought that I did an excellent job with my child-friendly chats about MS.
'Why do you think I inject myself in the leg every week?' Now, the children look animated. Leon puffs his chest out, 'When I had my injection in school last year, I didn't cry. Amy did. She wanted her Mammy'. Mya has a similar tale, saying that her injection didn't hurt, not even 'one single little bit'.
Mya reminds me that she always runs to get me tissues if my leg bleeds and rubs my thigh if it is particularly painful. She than recalls the sorry tale of when she fell over his bicycle and cut her knees earlier in the summer.
I changed tack. 'What is it like for you two to have a Mam with MS?’ Mya asked me if I could cook some pasta. Leon threw his eyes up and said, 'Oh man, this is SOOOOO boring' and runs outside to play.
Interview ceased, 17.35pm
I've tried to reinstigate the conversation on a number of occasions. Each time, I've been met with similar sighs and groans. My conclusion? My perception of how my MS affects my children is very different than theirs.
My children were three and a half when I was diagnosed with MS. Since that time, I have spent too much time feeling guilty about the fact that I don't always have as much energy for them as I would like. Bedtime stories not read, cakes not baked, unrealised art projects. Times when I cannot bear noise, light or touch and want to lie in a quiet, darkened room. Times when I have locked us all in the house, let them loose on the contents of the fridge, with the TV babysitting, while I slept.
Reality check: I work full-time in a rewarding, but hectic job. I am 40 years young. I'm sure that other working mommas, who don't have MS, experience similar guilt.
My MS is pretty stable since my diagnosis, but from time to time, I do worry about my health in the longer term. I worry about what sort of mother I will be. Will I be able to provide for them until they are financially independent? My biggest dread is being a 'burden' on my children.
Generally though, I focus on the good stuff. Our shared 'joie de vivre'. Like my boy accompanying me on my runs. His aim: to make me a faster runner to win medals to give to him. My aim: to improve my fitness and help my overall wellbeing. Or my conversations on car journeys with my little girl, laughing our heads off and making pinkie promises to always be my best friend. Our day trips. The many parties and adventures with their friends.
All children are adaptable. If anything, my medical condition has made my children more patient. If I have fatigue or feel low, both myself and the children can enjoy cuddles on the couch. They may have jam sandwiches for tea from time to time, but hey! They both like jam and strawberries are fruit...
Maybe when my children are older, they will read this piece and contradict everything that I have written. They may talk about their damaged childhood. The missed opportunities. They might even sue me ! But I'd like to think that they would say that they have empathy for other people and have an appreciation of little things. And no fear of needles.
POST SCRIPT: I've just read this article out to my children, asking what they thought about it. Mya said she understands most of the words and smiles at me. She likes that I have said nice things about her. Leon said that it 'was too boring to listen' too.