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Do You Feel Like Your Life is on Hold?

Do You Feel Like Your Life is on Hold?

A trip to visit my best friend and family and also attend a wedding with my husband in beautiful Whistler. A little getaway from the kids…or not.

Last week I had to cancel my flight. My daughter has not been well at all this past month and a half.

Both of us parents being away (and a whole-day’s-travelling- distance away at that) was just going to be too much.

Did I mention that I HATE seizures?! I actually detest them.

They are one of the most terrible things in this world in my mind. So much unknown. So many questions.

What was the trigger? Why now? Why my little girl?

Two out of my four daughters have epilepsy. SO not fair!

Elizabeth started having grand-mal seizures at just six months of age, and she was on medication until she was seven years old.

All her testing always came back completely normal- so we had high hopes she would someday outgrow her ‘childhood epilepsy of unknown origin’.

She was weaned off the meds, and went for a while with only one break-through seizure last year.

Until last month. She’s had four seizures now since mid January and is back on medication for the foreseeable future. Awaiting the results of a recent EEG and MRI.

No known trigger or cause that we can pin down.

We feel helpless. On high alert.

She’s fallen twice and banged her face pretty bad at the onset of a seizure. The last three have been in her sleep and she’s bitten her tongue.

Thankfully she has a great big sis (aka ‘lil angel’) that shares her room and wakes me up if she hears the strange gulping and moaning sounds of a seizure.

Life to some degree has come to a halt. I’ve had to put some things on the back-burner and focus on being a mom and carer to my girls.

Travelling can wait. My nursing shifts can wait. Classes and massages for my essential oils can wait. Meeting friends for dinner and any leisure plans can wait.

Family comes first.

The more children I’ve had (I’m done now, thank you very much!), and the more health issues that arise, the more I learn that it takes a lot of time and patience, and love, to be a mama.

You will need to make LOTS of sacrifices. You will need to improvise, and revise your plans, often!

Life doesn’t always work out the way you either want it to, or thought it would.

But even so, I’m ever thankful for each day with my little treasures, and blessed to be called, “Mom”.

Firefly Blog

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

Rebecca Toal

Meet Our Blogger

Blessed, busy mum to four beautiful girls, the youngest with complex special needs due to extreme prematurity. We are always looking for ways to make Brielle happy and help her live life to the full! I love being a mum, getting outdoors with my family, baking, blogging and crafting

View Rebecca’s Profile

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