• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

When did this become so normal?

When did this become so normal?

People are curious creatures. So they look. Especially children. I don’t mind the curious looks anymore, but at one time this would make me sad. Sad that our lives were so unusual that people found it interesting (looking is not to be confusing with gawping or staring which is a whole other kettle of angry fish). As a parent to a child with complex health needs and profound and multiple learning difficulties (PMLD) you go through various stages of emotions. In the beginning it was shock and grief, which then progressed into injustice and anger. I felt that everyone should understand and appreciate how difficult our lives had become and became frustrated when they didn’t (note to past self Rachel- people can’t read minds). It’s at the stage that you really need the company of parents in a similar situation. You read SN blogs, stories and captions that tell you how amazingly well you are doing, that you have superpowers, and pftt the rest of world for not knowing. The problem with this is you can end up shutting yourself off from the rest of the world. And while feeling safer, long term it isn’t helpful (in my opinion) because the world is still out there waiting.

The longer you leave it the harder it becomes to reintegrate. You can’t expect people to understand your life and your new normal without putting yourself out there, difficult though it may be. A boy once ran up to me in in our local park to ask about Nate’s nasal cannula and oxygen. I was quite happily answering his questions as his mother dragged him away apologising profusely. There’s that socially awkward area of what’s acceptable or not around disability. It varies from person to person, whether the disability affects yourself or a relative, which of the “stages” you are in, and if the individual concerned understands what people are discussing. For me personally, unless I’m completely sleep deprived and needing a caffeine infusion, or having a general “I hate the world day” I’m OK with questions from children and curiosity in general. What I don’t like is the casual way random adult strangers poke their noses into your life and offend or insult. As an adult you can’t get away with asking ” What’s wrong with him then?” or “Can they not fix him?”. Just no. It isn’t any of your business and quite frankly you should know better. I feel lucky to live in a time when children like my son aren’t hidden from view in a hospital or institution, and talked about in hushed sentences.

People with no experience of additional needs or disabilities need to be accustomed to seeing differences as.. well.. just that. Difference. Not bad or scary, just different. The last time we had sat in Starbucks as a family, a mother at the next table remarked to her child who was curious ” The little boy is having his lunch like you are but just down a tube instead” followed by a nod in my direction. Admirably dealt with I thought. Not that I spend a great deal of time drinking coffee or anything… or that when my friend went into said coffee shop without me they asked her where her friend was… Anyway.

My original point was ” When did all of this kit get so normal?” So normal in fact that my subconscious expects the whole of society to be totally unfazed by my messy syringe feeding. In fairness they may have been watching in the hope they could dodge anything sprayed in their direction. I’m not sure when it happened though. This acceptance of the new normal. I went through the aforementioned shock, grief, anger, injustice. So when did I hit “acceptance” ? I wish I could remember. I feel as if it must have been quite a turning point for me emotionally; heralding in a new age. And I missed it. Pants.

I wonder if there is some sort of equation for it? After x days and y hrs multiplied by number of days spent in tears you will finally come to terms with your new normal? And of course the equipment? Equipment is funny. Actually it’s not funny in the slightest. It’s more funny how you accumulate it over months or years without actually noticing it happening. It creeps up on you. One minute it’s occasionally an ng tube, then it’s a button, spare buttons and shed loads of syringes. It’s talk of a special bed, and then it’s hoists and slings. The mention of oxygen, and suddenly you are up to your eyes in cylinders, masks and cannulas. We were lucky in that this accumulation has happened so gradually.

I remember being terrified of the ventilators and mask, and oxygen tubing in the beginning. Actually if I’m honest I was more than a bit scared of Nate. Babies are terrifying needy little things at the best of times but I was so scared of not protecting him and keeping him safe. So yeah. It’s all perfectly normal to me.

This amazing amazing gorgeous little boy makes us very happy. He may make odd noises and really bad smells, but show me the 4 year old boy that doesn’t.

For more information on a Blended Diet check out this post - The Blended Diet

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.


Meet Our Blogger

Mam to thea 8 and nate 4 who has just been diagnosed with ATR-X syndrome (previously a SWAN - syndrome without a name) loves reading, keeps her sane -ish

View Rachel’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...