*TRIGGER WARNING: This post focuses on a topic of sensitive nature, which some readers may find upsetting.*
When I first started using Non-invasive ventilation (a type of portable ventilator that delivers breathing support via a mask), my first thought was “What if my children are scared of it? Scared of me even?” This is one of the many realities of being a Mother with a life-limiting condition. The constant worry of how my daily needs/equipment and care impinge on my children’s childhood.
In the beginning, I tried to protect them from the realities of my Muscular Dystrophy, by sneaking off to use my machines (if I needed in the daytime) and close the door behind me. This resulted in screaming frenzies as they beat on the door because they simply wanted to be with me. My youngest is particularly clingy and like most toddlers, follows me to the toilet, in the bath… Wherever I am, they want to be! I quickly realised I was distressing them more by trying to hide these vital bits of kit, than simply letting them in.
“Letting them in” both physically and emotionally wasn’t as difficult as I imagined. It really cemented the notion that children are brilliant at adapting to anything! I explained in an age-appropriate way what each of my machines does because I needed them to know they are important, but not something to be frightened of.
“This one helps Mummy breathe at night and if I need a bit of help in the day because our lungs are muscles too, and Mummy’s lungs aren’t super strong like yours,” I’d explain while they explored the mask and tubing. “And that one is to help Mummy cough. You need strong lungs to cough so this makes my lungs do a BIG cough like you can! The smallest machine is for sucking out Mummy’s toothpaste, spit or food if I choke. All these help Mummy spend more time with you both and not in hospital. That’s good isn’t it?,” both nodded enthusiastically. I wanted them to see the respiratory equipment in a positive light, rather than a hindrance – like I sometimes felt.
Now 6 and 3 years old, they are not phased one bit. Ava climbs into my bed multiple times a week and gets behind me and hugs me tight while I’m all hooked up, she still wants me. I face away from her so the air doesn’t blow in her face. Don’t think I’d be a fan of that either when I’m trying to sleep! 😂 But other than that, my girls don’t bat an eyelid. They fight over who gets to switch them on (with supervision of course), as they like to feel involved. They call my ventilator “Mummy’s elephant nose,” you only need look at the photo in this blog to see why – ha!
It’s amazing how things that once seemed so dreaded and inconvenient, turn out so, for lack of a better word – normal. This is our normal, and normal is different for everyone and in every family dynamic.
Are you a parent with a serious/chronic illness and struggling to have difficult conversations with your little ones? Try these tried and tested children’s books to encourage open dialogue between you and your child.
Helpful resources –
A popular, private Facebook support group providing up to date information on respiratory weakness and protocols for patients with Neuromuscular conditions, as well as peer-to-peer support in all things breathing including non-invasive/invasive ventilation and weak cough.