Adjusting to NIV around my children

Black and white photo of me in bed, head on my pillow, on my ventilator with Ava cuddling me from behind

*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 –

Breathe with MD

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.


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8 thoughts on “Adjusting to NIV around my children

  1. I found this really interesting, kids are so resilient aren’t they. I’ve been talking to my husband about having my treatment at home, it would be subcutaneous rather than IV but I’d still need to rest and have needles and equipment. My husband reckons it would be too stressful for the kids, but I think that if I made a safe place for my treatment in my bedroom they could come in only if they wished. I wouldn’t hide anything from them. I’m sure they would cope and my husband is not giving them enough credit. It would be so much better than having to spend days away from them in hospital. Maybe we’ll come to some agreement by the time I get to discuss the idea with my consultant.

    1. Hi Anne, I can understand its alot for your husband to take in. I have all my equipment in clear plastic drawers up high in a chest of drawers (out of the way of my youngest and my oldest knows better). As your care needs involve needles etc, I’d suggest getting a cupboard or drawers system that’s lockable! I’m unsure how old your children are but if old enough, perhaps you and your hubby can sit down with them and give them the two options. Let them decide. Best of luck Anne!

  2. It’s great that you are able to explain and share your experience with your kids, we sometimes worry that they won’t understand and scare them. It’s amazing that children have such great capacity to absorb information and not judge, we can really learn from them. Good luck with your journey and I wish you the best. #DreamTeam

  3. How wonderful that you can now share this with your children. I find they are far more adaptable than we give them credit for. Thanks for joining #TriumphantTales.

  4. Oh bless, kids really are a lot stronger than we think. I think once they understand the what, why’s and how’s and get used to seeing medical equipment like this, over time it just becomes the normal. And you are mummy… there’s no way that are not going to love you in your ‘elephant nose’ lovely – which actually looks quite neat and compact. Thanks for joining us for the #dreamteam x

  5. I think its brilliant that you aren’t shying away from having potentially difficult conversations with your children. I’ve found with my two that just by making things there and part of every day life, they’re ok and will ask questions as and when they need to. Thanks for linking up #twinklytuesday

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