Living Outside of the Bubble

Rebecca Toal by Rebecca Toal Additional Needs

Rebecca Toal

Rebecca Toal

Blessed, busy mum to four beautiful girls, the youngest with complex special needs due to extreme prematurity. We are always looking for ways to ma...

I often wish I could insulate my medically-complex daughter in an imaginary ‘safe bubble’, sheltered from everyday microorganisms and harm.

But it’s simply wishful thinking that I can protect her like this.

Unless you’re the ‘bubble boy’, or suffer from severe combined immunodeficiency (a genetic disorder which results in an extreme vulnerability to infectious diseases) and require specialized intensive protection from pathogens.

My five year old has chronic lung disease and asthma resulting from her extreme prematurity.

I do not even know off hand how many times she has been hospitalized with a chest infection.

But off she goes to school every morning just like her big sisters.

She LOVES school! I couldn’t deprive her of that time and independence. But boy do I hate all the bugs she picks up…

She wasn’t even back a week at school this term and her teacher called me to say there was a cold going round and I should take Brielle home early.

Low and behold she didn’t escape it, and was coughing and on nebulisers and increased steroids for the following week.

The fact is, she is in school five hours a day, five days a week with a classroom of other children and staff.

There are a multitude of bugs on the floors, the counter tops, door handles, play equipment and EVERYONE’S hands.

And she depends on people’s hands SO MUCH as she cannot walk without the assistance of a hand, and receives information and communication through touch and tactile sign language.

So she is relying on other’s hands being kept clean too for her own health.

As a mom, and a nurse, I recognise the fine line between letting her build up immunity by being exposed to germs daily, and protecting her health from infectious disease.

I am somewhat of a fanatic on hand cleanliness!

Really, it is one of the best ways you can protect your health and prevent infection!

So Brielle gets her hands washed very often, and thankfully just loves playing with soap and water. It’s very sensory

And I will continue to keep her home from or off the bus if I have my doubts about a bug going around.

I find close communication with the teacher and her assistant essential to let them know her vulnerabilities.

That’s all I can do- she can’t live in a bubble!


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